Maher, Erin J.; Kelly, Jean F.; Scarpa, Juliet P.
The early care and education field lacks an evidence base of effective programs to support caregiving quality among family, friend, and neighbor, or unlicensed, caregivers. This article presents the results of a qualitative evaluation of a program implemented with 20 primarily low-income English- and Spanish-speaking grandparents providing…
van den Heuvel, ETP; de Witte, LP; Stewart, RE; Schure, LM; Sanderman, R; Meyboom-de Jong, B
In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and
Bademli, Kerime; Duman, Zekiye Çetinkaya
"Family to Family Support Program" is a significant intervention program to assist families by informing them about treatment procedures and coping strategies, increasing their functionality, helping them to overcome the challenges of the disease. This study was particularly designed to investigate the emotions, thoughts, and experiences of caregivers of schizophrenia patients who participated in "Family to Family Support Program." The study was conducted with one of the qualitative research methods, phenomenological method. The study sample included caregivers who care for schizophrenia patients and participated in the "Family to Family Support Program". Twenty caregivers were included in the sample. The study was carried out in İzmir Schizophrenia Support Association. The study data were collected with four open ended questions. The average age of the participants was 56,77 ± 72,89, 10 male caregivers and 10 female caregivers, 9 caregivers were fathers, 6 caregivers were mothers, and 5 of them were siblings. The thematic analysis indicated that the emotions, thoughts and experiences of caregivers can be categorized in four groups: "I learned to deal with my problems", "I am conscious in my interaction with the patient and I know and I am not alone", "I feel much better", and "Schizophrenia is not the end of the road, knowledge sorts things out." Caregivers who participated in "Family to Family Support Program" expressed their satisfaction that they were benefited from the program, their coping skills were improved, they experienced less challenges when providing care, they understood the disease better, and it felt comfortable. Copyright © 2015 Elsevier Inc. All rights reserved.
Carbonneau, Hélène; Caron, Chantal D; Desrosiers, Johanne
The loss of autonomy associated with dementia affects the people with dementia themselves as well as their caregivers who are often left feeling powerless and incompetent in their caregiving role. Most of the programs developed to support caregivers focus on burden and do not consider the positive aspects of caregiving. Leisure represents a way to enhance the presence of positive aspects in the caring experience. Moreover, leisure might contribute to the maintenance of satisfactory relationships between the caregivers and the person with dementia. An adapted leisure education program was developed as a means of support to caregiver involvement. This study (n=49) aims to evaluate the impact of this program on caregivers' well-being, self-efficacy towards adapted leisure, and quality of the relationship with the care receiver. Mixed methods were used. Pretest-posttest with a follow-up design made up the quantitative part. In addition, open-end interviews (n=10) were conducted. The quantitative results showed few impacts of the program on caregivers. However, the qualitative analysis revealed that the intervention had positive impacts for the caregivers, care receivers and other family members. This study introduces caregiver support in a new, positive perspective by focusing on the positive aspects of caregiving rather than the burden. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.
Hu, Xiaolin; Dolansky, Mary A; Su, Yonglin; Hu, Xiuying; Qu, Moying; Zhou, Lingjuan
Caregivers of patients with heart failure experience burden and negative health outcomes. Adequate support for family caregivers improves their well-being and the quality of care provided to the patients. However, little is known about the benefits of interventions for caregivers of patients with heart failure in China. To test the effects of a multidisciplinary supportive program for family caregivers on caregiver burden, quality of life, and depression. A randomized controlled design with repeated measures was used in this study. A total of 118 participants were randomized into experimental (n=59) and control groups (n=59) from May to December 2014 in one hospital in Chengdu, People's Republic of China. Participants in the experimental group received a 3-month multidisciplinary supportive program, consisting of three 60-min sessions of group classes, three 30-min peer support groups, and regular telephone follow-ups and consultations, while participants in the control group received usual care only. Outcomes were caregiver burden, quality of life, and depression. Data were collected at baseline, post-test (3 months after discharge), and 3 months after post-test (6 months after discharge). The repeated measures analysis of variance was used to examine the effects of groups, changes over time, and time-group interaction on outcome variables. There were significant improvements in caregiver burden, mental health, and depression after post-test and 3 months after post-test in the experimental group. However, there was no significant improvement in caregivers' physical health at either 3 or 6 months following discharge. A multidisciplinary supportive program for caregivers of heart failure patients had positive effects and provides a unique perspective of an intervention considering Chinese culture and customs. Copyright © 2016 Elsevier Ltd. All rights reserved.
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van den Heuvel, ETP; de Witte, LP; Nooyen-Haazen, [No Value; Sanderman, R; Meyboom-de Jong, B; Nooyen-Haazen, I.
Caregivers of stroke patients who live at home experience many problems. There is evidence from the literature that caregivers' situations can be improved by teaching them active coping strategies and by offering them information about the disease. This study investigated the short-term effects of
... May 5, 2011 Part IV Department of Veterans Affairs 38 CFR Parts 17 and 71 Caregivers Program; Interim...; ] DEPARTMENT OF VETERANS AFFAIRS 38 CFR Parts 17 and 71 RIN 2900-AN94 Caregivers Program AGENCY: Department of... Affairs (VA) interim final regulations concerning a new caregiver benefits program provided by VA. This...
Sung, Minjung; Park, Jiyeon
In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…
Hüll, M; Wernher, I
Despite an increasing number of trials on the effects of psychosocial interventions in dementia, recommendations concerning these interventions are still based on limited evidence. The S3 dementia guidelines, initiated by the German associations of psychiatry and neurology (DGPPN and DGN), suggest the use of procedures including reality orientation, reminiscence, and cognitive stimulation at recommendation level C. Occupational therapy (including caregiver education), physical activation and music therapy are also suggested at recommendation level C. On a higher level of recommendation (level B), structured support of the caregiver is recommended. Based on the German healthcare system and depending on local structures, this may be offered at the medical office of a general practitioner, a specialist for neurology or psychiatry or at a memory clinic or an outpatient clinic. Furthermore, caregiver support is provided by local branches of the German Alzheimer Association. An increase in recent high level trials suggests an upcoming improvement of the evidence base for psychosocial interventions.
Dockham, Bonnie; Schafenacker, Ann; Yoon, Hyojin; Ronis, David L; Kershaw, Trace; Titler, Marita; Northouse, Laurel
Psychoeducational interventions, tested for efficacy in randomized clinical trials, are seldom implemented in clinical practice where cancer survivors and their family caregivers can benefit from them. This study examined the effectiveness of the FOCUS Program on cancer survivors' and their family caregivers' outcomes when implemented at a Cancer Support Community (CSC) affiliate by agency social workers. Study aims were to (1) test effects of the program on survivor and caregiver outcomes as a unit and (2) determine program feasibility in terms of enrollment, retention, intervention fidelity, and satisfaction. A preintervention and postintervention pilot effectiveness study was conducted with 34 cancer survivor-caregiver dyads (ie, pairs). The FOCUS Program, originally delivered by nurses in dyads' homes, was modified to a small-group format and delivered by CSC social workers. The primary outcome was quality of life (QOL). Intermediary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included repeated-measures analysis of variance. Dyads had significant improvements in total QOL; physical, emotional, and functional QOL; benefits of illness; and self-efficacy. Effect sizes were similar to prior randomized clinical trial findings. Although dyads were difficult to recruit (enrollment, 60%), both retention (92%) and intervention fidelity (94%) were high. It was possible to implement the FOCUS Program at a CSC affiliate by agency staff, obtain positive intervention effects, and maintain intervention fidelity. Researchers and clinicians need to collaborate to implement more evidence-based interventions in practice settings for cancer survivors and their family caregivers.
Preliminary Data from the Caring for Older Adults and Caregivers at Home (COACH) Program: A Care Coordination Program for Home-Based Dementia Care and Caregiver Support in a Veterans Affairs Medical Center.
D'Souza, Maria F; Davagnino, Judith; Hastings, S Nicole; Sloane, Richard; Kamholz, Barbara; Twersky, Jack
Caring for Older Adults and Caregivers at Home (COACH) is an innovative care coordination program of the Durham Veteran's Affairs Medical Center in Durham, North Carolina, that provides home-based dementia care and caregiver support for individuals with dementia and their family caregivers, including attention to behavioral symptoms, functional impairment, and home safety, on a consultation basis. The objectives of this study were to describe the COACH program in its first 2 years of operation, assess alignment of program components with quality measures, report characteristics of program participants, and compare rates of placement outside the home with those of a nontreatment comparison group using a retrospective cohort design. Participants were community-dwelling individuals with dementia aged 65 and older who received primary care in the medical center's outpatient clinics and their family caregivers, who were enrolled as dyads (n = 133), and a control group of dyads who were referred to the program and met clinical eligibility criteria but did not enroll (n = 29). Measures included alignment with Dementia Management Quality Measures and time to placement outside the home during 12 months of follow-up after referral to COACH. Results of the evaluation demonstrated that COACH aligns with nine of 10 clinical process measures identified using quality measures and that COACH delivers several other valuable services to enhance care. Mean time to placement outside the home was 29.6 ± 14.3 weeks for both groups (P = .99). The present study demonstrates the successful implementation of a home-based care coordination intervention for persons with dementia and their family caregivers that is strongly aligned with quality measures. © 2015, Copyright the Authors Journal compilation © 2015, The American Geriatrics Society.
Bahrami, Masoud; Farzi, Saba
The family caregivers of the people with cancer such as breast cancer experience a decrease in their quality of life and an increase of their caring burden. In most of the cases, the researchers consider the quality of life and physical and psychological problems in patients with cancer and pay less attention to the family caregivers. To reduce the caring burden imposed to the caregivers and improve their quality of life, supportive strategies such as problem solving can be used. These interventions may have benefits for the caregivers although the research results are contradictory. The aim of this research was to determine the effect of a supportive educational program, based on COPE model, which focuses on creativity, optimism, planning, and expert information on individuals, on the caring burden and quality of life in the family caregivers of women with breast cancer. The present study is a clinical trial, which was conducted in Seyed-Al-Shohada Hospital of Isfahan University of Medical Sciences and a private center of chemotherapy in 2012. In this study, researchers investigated the effect of a supportive educational program based on COPE model on the caring burden and quality of life in the family caregivers of women with breast cancer. This supportive educational program included two hospital visits and two telephone sessions based on COPE model for 9 days. A total of 64 patients were selected based on the inclusion criteria and randomly assigned into two groups. Data were collected by use of Caregiver Quality of Life Index-Cancer (CQOL-C), World Health Organization Quality of Life - Bref(WHOQOL-Bref)_, and Zarit caring burden at the beginning of the intervention and a month after the intervention. The results showed that in the experimental group, the mean score of physical, mental, spiritual, environmental domains and overall quality of life in the family caregivers was significantly increased compared to the control group, but there was no change in the
Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit
We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p < .001). Family caregiver burden were also higher in depressive groups (p < .001). Among patients only the depression was negatively correlated with PSS (p < .001, r = -2.97). Presence of depression (p < .001, r = 0.381) was positively correlated and family caregiver role was negatively correlated (p < .001, r = -0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.
Park, Myonghwa; Choi, Sora; Lee, Song Ja; Kim, Seon Hwa; Kim, Jinha; Go, Younghye; Lee, Dong Young
A growing number of studies are emphasizing the importance of positive and negative appraisals of caregiving and the utilization of social resources to buffer the negative effects of caring for persons with dementia. By assessing the roles of unmet needs and formal support, this study tested a hypothesized model for Korean family caregivers' satisfaction and burden in providing care for persons with dementia. The stress process model and a two-factor model were used as the conceptual framework for this study. Data for 320 family caregivers from a large cross-sectional survey, the Seoul Dementia Management study, were analyzed using structural equation modeling. In the hypothesized model, the exogenous variables were patient symptoms, including cognitive impairment, behavioral problems, and dependency on others to help with activities of daily living and with instrumental activities of daily living. The endogenous variables were the caregiver's perception of the unmet needs of the patient, formal support, caregiving satisfaction, and caregiving burden. The adjusted model explained the mediating effect of unmet needs on the relationship between patient symptoms or formal support and caregiving satisfaction. Formal support also had a mediating effect on the relationship between patient symptoms and unmet needs. Patient symptoms and caregiving satisfaction had a significant direct effect on caregiving burden. The level of unmet needs of persons with dementia and their family caregivers must be considered in the development of support programs focused on improving caregiving satisfaction.
Williams Allison M
Full Text Available Abstract Background Hope is defined by caregivers as the inner strength to achieve future good and to continue care giving. Pilot test findings of a Living with Hope Program (LWHP suggested it is an acceptable and feasible intervention for use by family caregivers. Although it shows promise in potentially increasing hope and quality of life, further testing and development is needed. Questions remain as to: a what are the mechanisms through which the LWHP affects outcomes and b how long it is effective? The overall purpose of this time series mixed method study is the further development and testing of the LWHP by: a. Determining the mechanisms of the LWHP by testing a LWHP conceptual model in which self-efficacy, and loss/grief are hypothesized intermediary variables for changes in hope, and subsequently quality of life among rural women caring for persons with advanced cancer, and; b. Exploring the longitudinal effects of the LWHP on hope, quality of life and health services utilization among rural women caring for persons with advanced cancer. Methods/Design Using a time-series embedded mixed method design, data will be collected from 200 rural women caregivers. Following the collection of baseline and outcome variables, the intervention (LWHP is applied to all subjects. Subjects are followed over time with repeated measures of outcome variables (1 wk, 2 wk, 3, 6 and 12 months. The journals that are completed as part of the LWHP comprise the qualitative data. Health services utilization data will be collected from the Saskatchewan Health Administrative Database for all subjects one year prior and one year after study enrolment. Path analysis will be used to test the model post LWHP, at 1 and 2 weeks. Two-factor ANCOVA will determine patterns over time and Cortazzi's narrative analysis will be used to analyze subjects journals completed as part of the LWHP. Discussion Data Collection began January 2009 and is expected to be completed within 2
Washington, Karla; Demiris, George; Parker Oliver, Debra; Shaunfield, Sara
Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision-making, family dynamics and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered. PMID:24345081
Hepburn, Kenneth W.; Lewis, Marsha; Sherman, Carey Wexler; Tornatore, Jane
Purpose: This article reports on the development and field testing of the Savvy Caregiver Program, the transformation of a successful, academic-based caregiver psychoeducational program into a self-contained program that can be adopted in other locations. Design and Methods: Program development began with a prototype of a 12-hr course with the…
Karahan, Ali Yavuz; Kucuksen, Sami; Yilmaz, Halim; Salli, Ali; Gungor, Tayfun; Sahin, Muhammed
Few data are available on the specific care giving-related problems of stroke patient's caregivers and factors that influence the burden of these caregivers. To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. A prospective clinical trial. Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM). The Beck Anxiety Scale (BAS) and the Beck Depression Scale (BDS) were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS) for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS) for perceived social support assessment. A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p Caregivers accept the rehabilitation period as important social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients' functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with stress effectively.
Ali Yavuz Karahan
Full Text Available Background: Few data are available on the specific care giving-related problems of stroke patient’s caregivers and factors that influence the burden of these caregivers. Aim: To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. Design: A prospective clinical trial. Setting: Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Populations: Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Methods: Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM. The Beck Anxiety Scale (BAS and the Beck Depression Scale (BDS were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS for perceived social support assessment. Results: A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p < 0.05. Conclusion: Caregivers accept the rehabilitation period as important social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients’ functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. Clinical Rehabilitation Impact: The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with
This article examines results from a consumer and caregiver-directed care pilot program for families with adults with developmental disabilities. Surveys were administered to 50 caregivers and three project coordinators, and focus groups were conducted with 44 individuals, including caregivers, consumers, and support coordinators. Significant pre-…
Schoeder, Chrystal Edge; Remer, Rory
The research on Tourette's disorder (TD), a neuropsychological disorder consisting of motor and phonic tics, has largely focused on individuals with TD and not on the caregivers of children with TD. We investigated the effects of several variables on caregiver strain of caregivers of children with TD, including perceived social support, caregiver…
Schure, Lidwien M.; van den Heuvel, Elisabeth T. P.; Stewart, Roy E.; Sanderman, Robbert; de Witte, Luc P.; Meyboom-de Jong, Betty
Objective: The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den
White, M H; Dorman, S M
Alzheimer's disease affects more than four million Americans and ranks as the fourth leading cause of death in adults. To deal with the stresses of constant caregiving, family members of patients with Alzheimer's disease are encouraged to participate in support groups. However, geographic and time constraints combined with lack of substitute caregivers may preclude attendance at traditional support groups. Internet-based groups offer caregivers the opportunity to interact with other caregivers for guidance, information, and encouragement. This project examines the content and themes of 532 messages posted on a public Alzheimer mailgroup during 20 days of 1998. Members used the mailgroup to find and proffer information, share experiences and opinions, and provide encouragement. By becoming aware of the potential advantages that online support groups offer to caregivers, nurses can encourage Alzheimer caregivers to use online groups as an empowering and practical adjunct to traditional caregiver support.
Jimenez, Daniel E; Schulz, Richard; Perdomo, Dolores; Lee, Chin Chin; Czaja, Sara J
The overall aim of this pilot study was to examine the feasibility and acceptability of a multicomponent, psychosocial intervention specifically designed to meet the unique needs of caregivers who are balancing caregiving duties with work responsibilities. Seventy-one family caregivers employed at a private, nonprofit institution in South Florida were randomized to either the Caregiver Workstation condition ( n = 35) or a control condition ( n = 36). Sixty-two caregivers completed the 5-month follow-up. Our results indicate that an intervention tailored to the time demands of a working caregiver is feasible, acceptable to caregivers, and has the potential to have positive long-term effects. Currently, there are limited data available regarding the benefits of employer programs for caregivers or the type of programs caregivers find most useful. This pilot study is the first step in developing a working caregiver intervention program that can be implemented on a broad-scale basis.
Al Awar, Zeina; Kuziemsky, Craig
Informal caregivers are playing an increasing role in community based care delivery. Research is needed that looks at the educational needs of informal caregivers as a precursor to HIT design to support community care delivery. A challenge is informal caregivers have very diverse educational needs. Personas are an approach to describe user characteristics as part of systems design and this approach could be used to understand and categorize the various educational needs of informal caregivers. This paper addresses this research need and provides a method for persona development and the identification of educational needs for informal caregivers.
... social support and caregiver's attitude on depression among VVF patients. Method: The survey method was used. The instruments used for data collection were the Beck's Depression Inventory (BDI) and two other scales developed by the researchers. These were the caregivers' attitude scale and the social support scale ...
Scharett, Emma; Madathil, Kapil Chalil; Lopes, Snehal; Rogers, Hunter; Agnisarman, Sruthy; Narasimha, Shraddhaa; Ashok, Aparna; Dye, Cheryl
Caregivers of Alzheimer's patients find respite in online communities for solutions and emotional support. This study aims to understand the characteristics of information caregivers of Alzheimer's patients are searching for and the kind of support they receive through Internet-based peer support communities. Using a Web crawler written in Python Web programming language, we retrieved publicly available 2,500 random posts and their respective solutions from April 2012 to October 2016 on the solutions category of the Caregiver's Forum on ALZConnected.org . A content analysis was conducted on these randomly selected posts and 4,219 responses to those posts based on a classification system were derived from initial analyses of 750 posts and related responses. The results showed most posts (26%) related to queries about Alzheimer's symptoms, and the highest percentage of responses (45.56%) pertained to caregiver well-being. The LIWC analyses generated an average tone rating of 27.27 for the posts, implying a negative tone and 65.17 for their responses, implying a slightly positive tone. The ALZConnected.org Web site has the potential of being an emotionally supportive tool for caregivers; however, a more user-friendly interface is required to accommodate the needs of most caregivers and their technological skills. Solutions offered on the peer support groups are often subjective opinions of other caregivers and should not be considered professional or comprehensive; further research on educating caregivers using online forums is necessary.
Han, Jung-Hee; Han, Song-Hee; Lee, Myo-Suk; Kwon, Hye-Jin; Choe, Kwisoon
Female patients with cancer depend on loved ones; thus, family support is pivotal to assist patients in successfully adjusting to life with treatment routines. Our study explored the experiences of primary caregivers who provide care and support for female family members with cancer. This study used a qualitative phenomenological research approach. Interviews and journaling about the caregiving experience were conducted with the family members of female cancer patients-6 spouses, 11 daughters, 1 son, and 1 younger sister. Data analysis involved Giorgi's 3-step phenomenological analysis method. The central theme of the primary caregivers' supportive care for their female family member with cancer was "being with" her. This was composed of the following themes: "being there for her via efforts," "living through feelings of guilt and anxiety," and "lessons learned from cancer in the family." This study reveals an integrated picture of family caregivers' supportive caring experiences. By providing both positive and negative aspects of the caregiving experience, the findings in this study will provide a theoretical foundation to develop more successful support programs for family caregivers of female patients with cancer. Family-oriented education programs need to be developed to include both the family and the patient in the long journey of cancer. The family caregivers' feelings of guilt regarding the cause of the illness and feelings of anxiety about the uncertainty of the illness should be assessed and managed during the course of the patients' treatment and care.
Halpern, Michael T; Fiero, Mallorie H; Bell, Melanie L
Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain. Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales. Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden. Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.
Abu Bakar, Siti Hajar; Weatherley, Richard; Omar, Noralina; Abdullah, Fatimah; Mohamad Aun, Nur Saadah
This article presents the findings of a self-report study of the consequences of being an informal caregiver in Malaysia. The aim of this exploratory study was to examine Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Data were obtained from a cross-sectional survey of informal caregivers in 2009. This sample comprised parents, spouses and/or adult siblings, and adult children, caring for their children, spouses or siblings and parents who were chronically ill and/or had a disability. Of 300 prospective participants, only 175 could be located (58%), but all those contacted agreed to participate. Respondents were randomly selected and interviewed using a structured questionnaire to identify the emotional, financial, social and physical issues consequent upon being a caregiver. Most respondents reported that their care-giving responsibilities had impacted their emotional, financial, social and/or physical well-being. Inadequate and/or uncertain income was by far the greatest concern followed in descending order by social, physical and emotional consequences. The one-way analysis of variance showed significant differences among the three categories of caregivers with respect to physical and emotional consequences. The findings show that care-giving has detrimental effects on the lives of informal caregivers, and that they are in significant need of social support to help them deal with care-giving tasks and responsibilities. Based on the findings, an integrated social support programme is proposed, tailored to the needs of informal caregivers. © 2013 John Wiley & Sons Ltd.
Ellington, Lee; Cloyes, Kristin G; Xu, Jiayun; Bellury, Lanell; Berry, Patricia H; Reblin, Maija; Clayton, Margaret F
Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders ( z = 2.1693) and nurses (z = 2.4718; all values of p schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.
Hibbard, J; Neufeld, A; Harrison, M J
Nurses in home care and long-term care settings play an important role in assisting family caregivers of elders who are cognitively impaired to sustain personal support while caregiving. Research has shown that such support is associated with positive health status. The characteristics of the caregiver's social network provide information about the potential for support. The purpose of this study was to describe and compare the social networks of men and women caregivers in terms of the composition of the social network and the size of the available, utilized and conflicted social networks. The possible relationship between the demographic characteristics of caregivers and the size and composition of their social networks was also examined. In comparison to men, the conflicted social networks of women were larger and comprised of more family members. For women, age, years of caregiving and socioeconomic status were not significantly related to the size of their social network. However, younger men and men of higher socioeconomic status reported significantly larger available social networks than other men. Knowledge of the gender differences in network size and composition that were identified in this study contributes to nurses' ability to identify caregivers who may be at risk for inadequate social support. In conjunction with the findings from related studies these results have implications for nursing assessment and intervention in home care and long-term care settings.
Haynes-Maslow, Lindsey; Allicock, Marlyn; Johnson, La-Shell
Breast cancer mortality rates continue to improve due to advances in cancer control and treatment. However, gains in breast cancer survival rates vary by race. Psychosocial support systems can lead to improved health outcomes among cancer survivors. This study was a part of a larger study exploring the challenges that both African-American cancer survivors and caregivers face across the cancer continuum. The objective of this paper was to explore African-American breast cancer survivors' and caregivers' preferences regarding characteristics and qualities of Peer Connect guides to inform the development of a peer support program. Forty-one African-American cancer survivors and caregivers participated in five focus groups lasting approximately 90 min. Participants were asked about what qualities or characteristics they would prefer in a peer support guide to make them feel comfortable talking with them. Focus group transcripts were analyzed using thematic content analysis, an iterative coding process. Themes were identified based on the research team's integrated and unified final codes. Twenty-two cancer survivors, 19 caregivers, and 3 individuals who were both survivors and caregivers participated in the focus groups. Participants discussed five preferences for peer support guides: (1) competency, (2) gender, (3) age, (4) cancer role status, and (5) relationship to participant. This study highlights cancer survivors' and caregivers' perceptions of characteristics needed for peer support providers that in turn can influence whether and how they participate in cancer support programs.
Chow, Susan K Y; Wong, Frances K Y; Poon, Christopher Y F
This study examines the physical and emotional burden experienced by caregivers of stroke survivors, compared with caregivers of patients having neurological diseases. Stroke survivors have residual neurological impairment, which requires long-term support and care. Anxiety, depression and poor physical health are common sequelae among family caregivers of stroke survivors. There is a reasonably consistent association between patients' levels of disability and emotional state and the emotional distress of their caregivers. A convenience sample of 47 families was recruited: of the 47 families, 23 had a member who suffered from stroke and 24 had a member with neurological disease. Two interviews were conducted at three and six months after the occurrence of the index stroke or neurological disease. When the two groups of caregivers were compared for anxiety, depression and physical health status after care giving, the caregivers of stroke patients demonstrated higher levels of anxiety and depression than their counterparts in the neurological disease group (p caregivers, while their age and level of depression contributed significantly to their physical health status. The physical and emotional well-being of two groups of family caregivers in a neurosurgical unit were compared in the caring context. The caregivers of stroke survivors are at a greater risk of developing poor physical and emotional health than the caregivers of patients having neurological diseases. The results illustrated that enhanced discharge planning and nurse follow-up sessions are considered essential in maintaining the well-being of the stroke caregivers and bridging the gap between the hospital and the community.
Full Text Available The growing incidence of dementia poses several challenges to the social support networks of people with dementia. Managing the symptoms of the disease is highly demanding and affects the well-being of the caregivers. Psycho-educational approaches have the potential to reduce the stress and burnout related to dementia caregiving demands. This paper describes the experience of two psycho-educational programs for family and formal caregivers. Main results are reported and recommendations for further intervention developments are identified.
Çatay, Zeynep; Koloğlugil, Dilşad
This study examined the effectiveness of a 20-session training and supervision support group for caregivers working at an orphanage in Istanbul. The support group's goals were to promote sensitive and responsive caregiving in an institutional setting, to decrease the stress level of the caregivers, and to increase the quality of the relationship between caregivers and children. Thirty-six children (15-37 months) and 24 caregivers participated in this study. Comparison of the pre- and posttest measures of the caregiver intervention and control groups indicated that the intervention yielded successful outcomes. Caregivers in the intervention group displayed significant decreases in the amount of psychological symptoms that they reported and in their emotional burnout levels. Their sense of self-efficacy also improved. In addition, at the end of the 5-month training program, positive developments were observed regarding children's development and problem behaviors. Having regular visitors also was found to be a significant predictor for better developmental outcomes for the children under institutional care. © 2017 Michigan Association for Infant Mental Health.
Lee, Youjung; Choi, Sunha
The purpose of this study was to explore how Korean American family caregivers view the services they offer to patients with dementia. It also investigated the roles of social networks and satisfaction with social support on attitudes toward caregiving. Social network, satisfaction with social support, demographic characteristics, caregiving-related stress factors, and cultural factors were examined. We used a convenience sample of 85 Korean American dementia caregivers. The results from hierarchical multiple regression models show that the level of satisfaction with social support significantly contributed to Korean American caregivers' attitudes toward working with patients with dementia, while no statistically significant associate was found for social network. Higher levels of satisfaction with social support were associated with greater positive attitudes toward caregiving among Korean American caregivers (b = 0.26, p = .024). The implications for mental health professionals and policy makers are discussed.
Kally, Zina; Cote, Sarah D; Gonzalez, Jorge; Villarruel, Monica; Cherry, Debra L; Howland, Susan; Higgins, Melinda; Connolly, Lora; Hepburn, Kenneth
This article reports on the impact of the Savvy Caregiver Program (SCP) on English-speaking caregivers of Hispanic, Black/African American, and Asian/Pacific Islander descent. Caregivers completed a questionnaire prior to study enrollment, at 6 and 12 months postenrollment. Caregivers in all 3 ethnic groups showed more caregiver competence, reduced depression, greater tolerance for care recipients' memory problems, better management of their overall situation, and improved perception of that situation 6 months and 12 months post-enrollment. The study demonstrates that in the sample studied the SCP was as effective in helping ethnically diverse caregivers as it has shown to be with Caucasian caregivers.
Maja Lopez Hartmann
Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010. Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.
Maja Lopez Hartmann
Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly.Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010.Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability.Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.
Walczak, Adam; Butow, Phyllis N; Tattersall, Martin H N; Davidson, Patricia M; Young, Jane; Epstein, Ronald M; Costa, Daniel S J; Clayton, Josephine M
Patients are often not given the information needed to understand their prognosis and make informed treatment choices, with many consequently experiencing less than optimal care and quality-of-life at end-of-life. To evaluate the efficacy of a nurse-facilitated communication support program for patients with advanced, incurable cancer to assist them in discussing prognosis and end-of-life care. A parallel-group randomised controlled trial design was used. This trial was conducted at six cancer treatment centres affiliated with major hospitals in Sydney, Australia. 110 patients with advanced, incurable cancer participated. The communication support program included guided exploration of a question prompt list, communication challenges, patient values and concerns and the value of discussing end-of-life care early, with oncologists cued to endorse question-asking and question prompt list use. Patients were randomised after baseline measure completion, a regular oncology consultation was audio-recorded and a follow-up questionnaire was completed one month later. Communication, health-related quality-of-life and satisfaction measures and a manualised consultation-coding scheme were used. Descriptive, Mixed Modelling and Generalised Linear Mixed Modelling analyses were conducted using SPSS version 22. Communication support program recipients gave significantly more cues for discussion of prognosis, end-of-life care, future care options and general issues not targeted by the intervention during recorded consultations, but did not ask more questions about these issues or overall. Oncologists' question prompt list and question asking endorsement was inconsistent. Communication support program recipients' self-efficacy in knowing what questions to ask their doctor significantly improved at follow-up while control arm patients' self-efficacy declined. The communication support program did not impact patients' health-related quality-of-life or the likelihood that their health
Maja Lopez Hartmann; Johan Wens; Veronique Verhoeven; Roy Remmen
Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly.Methods: A systematic literature search was performed in Medline, PsychINFO, Ovi...
Heuvel, Elisabeth Theodora Petronella van den
This thesis describes the development, implementation and results of an intervention targeted at two of the above-mentioned factors: caregiver characteristics and resources (knowledge and coping abilities) and social support. Furthermore, some insight is afforded into the state of the art of
LaValley, Susan A
Caregivers of those with life-limiting illness face many complicated tasks, including providing direct patient care, communicating with professionals, and managing the logistical demands of daily activities. To assist with caregiving responsibilities, caregivers require social support from social network members at all points in the illness process. This study analyzes themes from interviews with 61 caregivers of patients enrolled in hospice services to identify the types of support caregivers mobilize from new social network members for social support during the end-of-life care process. Themes indicate that caregivers receive accessible, immediate, caregiver-centered emotional support from hospice health care professionals, and situationally tailored, understandable informational support from other types of professionals. In addition, caregivers received overlapping emotional and informational support from hospice health care professionals. Findings enhance the understanding of how caregivers receive tailored emotional and informational support.
Grossmont District Hospital, La Mesa, CA.
This demonstration program was designed to impart specific nursing, psychosocial, and community knowledge skills to caregivers, particularly those who themselves were older adults and were caring for a family member at home. Begun in October 1986, this program featured basic home nursing instruction and an orientation to the demands and rewards of…
Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida
Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.
Ma, Gloria Y K; Mak, Winnie W S
The present study tested a model on the relationship between functional status of children with physical disability, caregiving-specific worry, affiliate stigma, and psychological distress among their caregivers. One hundred thirty-one caregivers of children with physical disability in Hong Kong completed a self-report questionnaire. Structural equation modeling showed that the final model had good fit to the data: χ2 = 102.05, (df = 83, p = .08), comparative fit index = .98, nonnormed fit index = .98, standardized root mean square residual = .08, root mean square error of approximation = .04. Caregivers whose children had a lower functional status reported more caregiving-specific worry. Affiliate stigma had significant and positive indirect effect on psychological distress through increasing worry. Results also supported the direct and indirect effects of perceived social support in ameliorating worry, affiliate stigma, and psychological distress. Findings suggested that health care and social service providers should consider the functional impairment of each child when designing stress reduction interventions for their caregivers. Findings implicate the importance of establishing barrier-free environment and public facilities in the society. Caregivers are encouraged to distinguish those worries that are actionable and convert them into problem solving plans and to actively engage in peer support and social activities to reduce their affiliate stigma. To truly promote inclusion and well-being of individuals with disability and their caregivers, the scope and targets of social services and stigma reduction programs by the government should include not only the persons with disabilities, but also their caregivers and family members who play essential roles in the rehabilitation journey. (PsycINFO Database Record (c) 2016 APA, all rights reserved).
Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet
Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.
Smith, Erin R; Broughton, Megan; Baker, Rosemary; Pachana, Nancy A; Angwin, Anthony J; Humphreys, Michael S; Mitchell, Leander; Byrne, Gerard J; Copland, David A; Gallois, Cindy; Hegney, Desley; Chenery, Helen J
Difficulties with memory and communication are prominent and distressing features of dementia which impact on the person with dementia and contribute to caregiver stress and burden. There is a need to provide caregivers with strategies to support and maximize memory and communication abilities in people with dementia. In this project, a team of clinicians, researchers and educators in neuropsychology, psychogeriatrics, nursing and speech pathology translated research-based knowledge from these fields into a program of practical strategies for everyday use by family and professional caregivers. From the available research evidence, the project team identified compensatory or facilitative strategies to assist with common areas of difficulty, and structured these under the mnemonics RECAPS (for memory) and MESSAGE (for communication). This information was adapted for presentation in a DVD-based education program in accordance with known characteristics of effective caregiver education. The resultant DVD comprises (1) information on the nature and importance of memory and communication in everyday life; (2) explanations of common patterns of difficulty and preserved ability in memory and communication across the stages of dementia; (3) acted vignettes demonstrating the strategies, based on authentic samples of speech in dementia; and (4) scenarios to prompt the viewer to consider the benefits of using the strategies. Using a knowledge-translation framework, information and strategies can be provided to family and professional caregivers to help them optimize residual memory and communication in people with dementia. Future development of the materials, incorporating consumer feedback, will focus on methods for enabling wider dissemination.
Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi
Living with heart failure patients is a complex situation for family caregivers. Few studies have been conducted to examine the effects of interventional programs to ease this condition. The purpose of this study was to determine the effectiveness of a supportive educative group intervention in reducing family caregivers' burden of caregiving. This randomized clinical trail was conducted at a selective teaching hospital in Isfahan, Iran in 2012. The intervention consisted of four weekly multimedia training sessions of 2 h that included education and family support for 50 family caregivers. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Paired t-test, Student's t-tests, and repeated measures analysis of variance (ANOVA) were used to test for significant differences of the mean scores of burden between the intervention and control groups over a 3-month period. The intervention was successful in reducing caregiver burden over time both at the end of the intervention period (P = 0.000) and 3 months after the intervention (P = 0.000). Nurses and other healthcare providers can use the findings of this study in order to implement effective programs to reduce family caregivers' challenges and to provide them more support.
Alyne Kalyane Câmara de Oliveira; Thelma Simões Matsukura
In this study, we aimed to describe the levels of stress and perceived social support for caregivers of children with cerebral palsy (CP), as well as investigate the relationship between stress, social support, and variables related to caregivers, the environment and children, namely: the number of children, education level of caregivers, family income, behavior, and the child’s motor level. This study comprised 50 children with CP between 3 and 7.5 years old, their 50 caregiv...
Dorant, Elisabeth; Krieger, Theresia
Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.
Luciana Krauss Rezende
Full Text Available The objective of this study was to know the perception of social support for caregivers of children with Down’s syndrome (DS in relation to the degree of satisfaction and the number of people to support in the southern region of the State of Minas Gerais and establish the relationship between them. This is a study of quantitative analysis, exploratory and descriptive character, and clinical type cross-section. The study population consisted of 50 people from both genres, mostly mothers (92, caregivers of children with DS, aged 6 months and 7 and a half years, regular goers of specialized agencies. To the group studied, the vast majority of responses indicating supportive people pointed out the lack of a reference person, being ticked the answer "no". Then appear the husband, son, parents, siblings, friends, wife and children's doctor. The analysis of the correlation between the number of supportive people and satisfaction with social support showed satisfaction among low and moderate denoting that these caregivers could not count on a network of efficient social support in caring for children with DS. It is considered appropriate to increase actions and governmental and non-governmental incentives for the development of professional teams and specialized institutions focused care, rehabilitation and inclusion of children with DS and their families into society. Families need appropriate support programs in order to foster their capabilities.
Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Verdonck, Caroline; Annemans, Lieven
Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for delaying nursing home placement. Although considerable research has been conducted to investigate the effectiveness of psychoeducational interventions, cognitive behavioral therapy, and occupational therapy, research into the effectiveness of respite care is rare. This systematic review aims to investigate the effectiveness of different types of respite care in supporting informal caregivers of persons with dementia. A systematic literature search was conducted using Web of Science and PubMed, and the Quality Assessment Tool for Quantitative Studies was used to assess the methodological quality. Randomized controlled trials, quasi-experimental studies, pretest-posttest studies without a control group, and cohort studies were included. Seventeen papers met the inclusion criteria. Day care services are effective in decreasing caregiver burden and behavioral problems in persons with dementia, but they also accelerate time to nursing home admission. The results of temporary residential admission are rather mixed and show unexpected adverse effects on both caregivers and care recipients. High-quality comparable evidence on community-based respite care is still lacking, although earlier qualitative evidence indicated promising results. Unlike in previous reviews, we were able to draw some conclusions about the effectiveness of some types of respite care. There is nonetheless still a need for new intervention studies measuring the impact of respite care, especially in-home respite care programs, on the caregiver, the care recipient, and health care resource utilization. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.
Bank, Adam L.; Arguelles, Soledad; Rubert, Mark; Eisdorfer, Carl; Czaja, Sara J.
Purpose: Dementia caregiving is a rapidly growing public health problem. Logistical problems prevent many caregivers from utilizing available interventions. This article provides a demonstration of the usefulness of technology for conducting telephone-based support groups in ethnically diverse dementia caregivers. Design and Methods: Participants…
Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti
Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's…
Shieh, Shiouh-Chu; Tung, Hengh-Sin; Liang, Shu-Yuan
The main purpose of this study was to describe the level of experienced burden among Taiwanese primary family caregivers (PFCs) of patients with colorectal cancer (CRC). Another purpose was to explore the relationship between demographic variables, perceived social support, and caregiver burden. A cross-sectional study. This cross-sectional study included 100 PFCs of postsurgery colorectal cancer patients (CCPs) in one teaching hospital in the Taipei area of Taiwan. The research instruments included the Caregiver Reaction Assessment and the Medical Outcome Study-Social Support Survey. The caregivers' total burden mean was 3.00 (SD= 0.50, range = 2.00-4.19). Social support demonstrated a significant relationship with family caregiver burden (impact on health: r=-0.48, p family support: r=-0.54, p burden. Multivariate analysis identified social support as a significant independent influence on caregiver burden after controlling for key demographic variables. Social support accounted for 33% (R(2) increment = 0.33, p burden. The study highlights the importance of social support on caregiver burden in this population. Future interventions should include social support to help alleviate caregiver burden in CCPs following surgery. Results of this study emphasize the important role of social support to enable healthcare professionals to become more effective while caring for caregivers of the patient with CRC who has undergone surgery. The findings of the present study may facilitate cross-cultural comparison and cultural-oriented management of caregiver burden. © 2012 Sigma Theta Tau International.
Ducharme, Francine C.; Levesque, Louise L.; Lachance, Lise M.; Kergoat, Marie-Jeanne; Legault, Alain J.; Beaudet, Line M.; Zarit, Steven H.
Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a…
Lee, Jung-Ah; Nguyen, Hannah; Park, Joan; Tran, Linh; Nguyen, Trang; Huynh, Yen
Families of ethnic minority persons with dementia often seek help at later stages of the disease. Little is known about the effectiveness of various methods in supporting ethnic minority dementia patients' caregivers. The objective of the study was to identify smartphone and computer usage among family caregivers of dementia patients (i.e., Korean and Vietnamese Americans) to develop dementia-care education programs for them. Participants were asked various questions related to their computer or smartphone usage in conjunction with needs-assessment interviews. Flyers were distributed at two ethnic minority community centers in Southern California. Snowball recruitment was also utilized to reach out to the families of dementia patients dwelling in the community. Thirty-five family caregivers, including 20 Vietnamese and 15 Korean individuals, participated in this survey. Thirty participants (30 of 35, 85.7%) were computer users. Among those, 76.7% (23 of 30) reported daily usage and 53% (16 of 30) claimed to use social media. A majority of the participants (31 of 35, 88.6%) reported that they owned smartphones. More than half of smartphone users (18 of 29, 62%) claimed to use social media applications. Many participants claimed that they could not attend in-class education due to caregiving and/or transportation issues. Most family caregivers of dementia patients use smartphones more often than computers, and more than half of those caregivers communicate with others through social media apps. A smartphone-app-based caregiver intervention may serve as a more effective approach compared to the conventional in-class method. Multiple modalities for the development of caregiver interventions should be considered.
Kelley, Dannielle E; Lewis, Megan A; Southwell, Brian G
Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health. We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012) and the first round of the associated National Study of Caregivers survey (2011). Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016. Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2. Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network.
Ruiz-Robledillo, Nicolás; González-Bono, Esperanza; Moya-Albiol, Luis
Several studies have found disruptions in cortisol awakening response in informal caregivers. Institutional support may modulate these effects, and this study analyses how the health of caregivers is affected when institutional support is provided for families of people with high-functioning autism. Self-reported health, depression and cortisol awakening response were analysed in three groups: supported caregivers, non-supported caregivers and non-caregivers. Non-supported caregivers presented higher somatic symptoms and lower cortisol awakening response than the supported caregiver and non-caregiver groups. A high number of somatic symptoms and low functionality of offspring were related to a lower cortisol awakening response only in the non-supported caregiver group. These findings demonstrate the importance of institutional support for improving the health of caregivers. © The Author(s) 2013.
Lucy Barrera Ortiz
Full Text Available Este artículo presenta el programa "Cuidando a los cuidadores", diseñado por el Grupo de Cuidado al paciente crónico de la Facultad de Enfermería de la Universidad Nacional de Colombia para fortalecer las habilidades de cuidado de cuidadores familiares de personas con enfermedad crónica dentro de un proceso investigativo que, además probó su efectividad. El citado programa se desarrolló en respuesta a las necesidades identificadas en diferentes ciudades de Colombia y en diferentes países de América Latina donde se encontró una habilidad de cuidado deficiente en cuidadores familiares de personas con enfermedad crónica, concomitante con la responsabilidad de ser cuidador principal de un familiar en esta situación. Este programa se basa en los lineamientos conceptuales de Ngozy Nkongo: el conocimiento, el valor y la paciencia. Los 280 cuidadores de personas con enfermedad crónica de la ciudad de Bogotá y sus alrededores, vinculados al programa de la Facultad de Enfermería de la Universidad Nacional de Colombia, fueron contactados por medio de instituciones de salud, Empresas Prestadoras de salud (EPS, Instituciones Prestadoras de Servicios (IPS y asociaciones que trabajan con personas con enfermedades crónicas o remitidos por otros usuarios que han participado en el programa.This article presents the program Caring for Caregivers, created by Universidad Nacional de Colombia. School of nursing, Chronic Patient Academic Group to strengthen the care of relative’s caregivers of people with chronic disease. It uses an investigative process that proven its effectiveness. The program was developed in answer of identified needs in different cities of Colombia and different countries of Latin America, where there were a deficient caring ability of relative’s caregivers of people with chronic disease. Concomitant with the responsibility of to be the main caregiver of a relative in this situation. This program is based in the theoretical
Rafael Barreto de Mesquita
Full Text Available Objective: To assess the formal and informal support given to the family caregiver of a patient with Spinal Muscular Atrophy I and II. Method: This was a study with a qualitative approach developed in 2008 in the homes of informants and in the premises of the Hospital Infantil Albert Sabin in Fortaleza, Ceara, conducted with 13 mothers, primary caregivers for their ill children. For data collection we used both the interview and the instrument generator of the names and qualifier of the relations, adapted for this study. Quantitative data were processed using the programs UCINET NetDraw 6.123 and 2.38, while the qualitative data were organized based on the technique of the Collective Subject Discourse. The analyses were conducted by means of network maps and collective discourses raised by central ideas. Results: The formal social network of family caregivers was composed of 72 actors, among professionals in the areas of health, education and others, linked to 12 institutions. The informal network was comprised of 83 actors. It was found that the management of care, even when the caregiver has support from other people is a cause of stress and overload. Conclusion: It is evident the importance of applying Social Network Analysis as a tool for understanding structural features and the dynamics of social relations of family caregiver. Of a patient with spinal muscular atrophy. The analysis suggests the need for intervention in thestudy group as a way to contribute to the recognition and use of existing services, increasing the significance of the help provided by network interactions.
Cagle, John G; Kovacs, Pamela J
This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included coresiding, proximate, and long-distance caregivers. Thematic analysis was used to analyze the qualitative data from 2 caregiver surveys, one administered prior to the care recipient's death and another completed 3 months postdeath. Respondents (N = 69) interpreted preparedness broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.
Full Text Available Abstract Introduction Family (i.e., unpaid caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB. Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced
Østbye, Truls; Malhotra, Rahul; Malhotra, Chetna; Arambepola, Chandima; Chan, Angelique
To assess the instrumental support from a foreign domestic worker (FDW) as a moderator of the association of 4 types of impairments (physical function, memory, behavior, and mood) among older persons (OPs) with caregiving-related outcomes among their informal caregivers (CGs). Data from a national survey of 1,190 Singaporeans aged 75 and older receiving human assistance for functional limitations and their CGs were used. Severity scores for the four OP impairments were calculated. A modified version of the Caregiver Reaction Assessment (CRA) assessed the impact of caregiving in four domains: disturbed schedule and poor health, lack of finances, lack of family support, and CG esteem. Linear regression models, one for each CRA domain, with interaction terms of the four impairment severity scores with FDW support, were developed. FDW instrumental support, reported for 50% of the OPs, moderated the direct association of OP physical impairment with disturbed schedule and poor health (p = .009), OP memory impairment with disturbed schedule and poor health (p < .0001) and lack of finances (p = .02), and OP behavior impairment with lack of family support (p = .001). Although such support buffered the inverse association of OP behavior impairment with CG esteem (p = .01), it also buffered the positive association of OP mood impairment with CG esteem (p = .02). FDW support is associated with better caregiving outcomes. Given its aging population, the number of FDWs in Singapore is likely to increase as families try to cope with caregiving for their older members. This has policy implications for (a) immigration patterns into Singapore and (b) training of and support networks for FDWs.
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Benifei, Sarah; Facon-Delahaye, Aline; Vautier, Virginie
The experience of the French military health service in the fight against the Ebola epidemic in Guinea, highlights the importance of what favours the emergence of an institutional life in a context of care faced with numerous constraints and extraordinary challenges. The meticulous drawing up of procedures and the juxtaposition of expertise goes hand in hand with the construction of a triangular care system (caregivers-patients-families). This relational approach ensures each player in this system is able to find their place and a balance between constraints and satisfactions, losses and successes, isolation and support. This balance seems to favour individual and group resilience. Copyright © 2015 Elsevier Masson SAS. All rights reserved.
Full Text Available Abstract The Brazilian Alzheimer's Association recommend the dementia patient's caregiver to attend group meetings which aim to give information and enable them to express and share feelings with individuals who are facing similar difficulties. Objectives: To identify the sociodemographic profile of the individuals who attend the Support Group for Family Members of Individuals with Alzheimer's disease at Hospital de Clínicas de Porto Alegre, and to verify the degree of burden associated to the care given to this kind of patient. Methods: Forty-eight participants were sub-divided into two groups: 23 non-caregivers and 25 caregivers. All participants answered a sociodemographic questionnaire, and the caregivers also answered the Zarit Burden Interview (ZBI. Student's t test was used for comparison of parametric data, and Chi-square test for categorical data between caregivers and non-caregivers. Spearman's rho correlation analysis was performed for the ZBI and the studied variables. Results: Participants were predominantly women. Only age differentiated one subgroup from the other. The mean score on the ZBI was 35.1 (14.7, and most of the caregivers presented up to moderate burden. Conclusions: Women attended the Support Group either as caregiver or non-caregiver. The level of burden among caregivers of high educational attainment was relatively high besides the short time as caregiver (up to a year.
Urrutia-Pereira, Marilyn; Ávila, Jennifer Bg; Cherrez-Ojeda, Ivan; Ivancevich, Juan Carlos; Solé, Dirceu
Social media has been used in support of patients with asthma. However, it remains unclear what are the expectations of parents or caregivers of asthmatic patients. To evaluate the expectations of parents or caregivers of asthmatic children treated at Children's Asthma Prevention Program (PIPA), Uruguaiana, RS, in relation to the use of social media. An observational, descriptive, cross-sectional survey of parents or caregivers of children seen at Children's Asthma Prevention Program through responses to a written questionnaire on the use of new technologies and different applications to enhance information about asthma. 210 parents or caregivers (median age: 25 years; age range: 18-42 years of patients were enrolled. The mean age of their children was 7.3 years (age range: 2 to 18 years), the mean duration of asthma was 4.7 years and 65% of parents/caregivers of these children had less than eight years of schooling. Most of them (72%) had no access to the Internet via cell/mobile phones and only 18% actively used to gathered information about asthma by internet. There was high interest (87%) in receiving information via social media. Parents or caregivers of children attending the PIPA program expressed high interest in using social media. However, few use it to control their children's disease. While providing a great benefit to use social media as a mean of communication in health, the content needs to be monitored for reliability and quality. The privacy of users (doctors and patients) must be preserved and it is very important to facilitate the access to Internet.
Nishio, Midori; Kimura, Hiromi; Ogomori, Koji; Ogata, Kumiko
Object: To clarify the emotional and instrumental support influencing male caregivers for people with dementia living at home. Patients/Materials and Methods: The subjects were 298 male caregivers. Nursing care burden was assessed using the Zarit Caregiver Burden Scale. Ability to cope with care problems was assessed using the Nursing Care Problems Coping Scale for Male Caregivers for People with Dementia Living at Home (NCSM). Emotional support was assessed using the Emotional Support Network Scale. Instrumental support was assessed using the question "Do you have someone to help when you have a problem with nursing care?". Results: There was a significant correlation (P instrumental support for male caregivers was more than three times more likely to be obtained from within the family than outside it. With families becoming smaller, it is becoming more important for communities and society in general to provide emotional and instrumental support for male caregivers. Male caregivers need support from someone with whom they feel comfortable. It is particularly necessary to consider how to support male caregivers who use the "Emotional avoidance" coping style.
Joyce, Brian T; Berman, Rebecca; Lau, Denys T
Managing medications is a complex responsibility of family caregivers caring for end-of-life patients. This study characterizes caregivers with and without formal/informal support managing medications for patients who receive end-of-life care at home. To explore factors related to caregivers' support with managing medications for end-of-life home hospice patients. A convenience-sampled, cross-sectional telephone survey. Computer-assisted telephone interviews were administered to 120 caregivers managing medications, who were referred by five Chicago-based home hospice services. We measured caregivers' additional formal (paid) and informal (unpaid) support with managing medications, and caregiver/patient socio-demographic, relational, and health characteristics. While 47 (39%) had no additional support with managing medications, 27 (22.5%) had formal support, 37 (31%) informal, and 9 (7.5%) both. Seven caregivers (19%) with formal and 13 (31%) with informal support reported disagreements concerning treatment plans. Caregivers lacking formal support tended to be racial/ethnic minorities, live with the patient in their home, or report greater emotional burden. Caregivers with formal support tended to report higher education/income, lower mutuality, or care for a patient with over 6 months' hospice enrollment. Caregivers lacking informal support tended to be spousal caregivers, live with the patient, or have experience caring for another dying person. Our study suggests that high proportions of caregivers may not have support managing medications for patients receiving hospice care at home. More research should examine whether the observed variations in obtaining support indicate disparities or unmet needs among caregivers. Disagreement about treatment with formal/informal support also warrants further investigation. © The Author(s) 2014.
Jansma, F.F.; Schure, L.M.; Meyboom-de Jong, B.
Health policy is shifting from professional to informal care. Studies have shown that informal caregivers provide an average of 55% of the needed care. The aim of this study was to get insight in the needs of the caregivers of patients with palliative cancer and how to address those needs with a
Full Text Available Context: Care of a child having colostomy has not been institutionalized for a long time for economic and administrative reasons. After stoma formation, stoma care has to be provided to the child by caregivers at home. Hence, caregivers need to be provided with ongoing education and support, commencing from preoperative teaching to discharge from the hospital and home care. Aims: The aims of this study were to develop video-based learning resource material and to evaluate its effectiveness in terms of knowledge and skill attainment by caregivers. Settings and Design: The study design was time series, one group pretest and post test. This was conducted among 30 caregivers attending pediatric surgery outpatients and indoor departments of a tertiary level care center. Materials and Methods: A video teaching program (VTP related to pediatric colostomy was developed and used to teach the caregivers about colostomy care. Pretested and validated knowledge questionnaire, observational checklist, and stoma assessment scale (SAS were used to assess the knowledge and skills of caregivers before and after the administration of VTP immediately (post test 1 after and 2 weeks (post test 2 after the intervention. Statistical Analysis Used: Repeated measures analysis of variance (ANOVA, Bonferroni correction, Mann-Whitney U test, and Kruskal-Wallis test were used. Results: There were significant increases in knowledge (from 10.9 ± 2.5 to 16.4 ± 1.67 and 15.9 ± 4.02, P = 0.001, maximum score 20 and skill scores as assessed by the observation checklist (from 5.6 ± 2.0 to 9.8 ± 1.6 and 8.6 ± 2.1, P = 0.001, maximum score 12 immediately after and 2 weeks after the VTP. However, a decline in skills was observed at 2 weeks when compared with immediate scores, as measured by the observation checklist. There was no significant increase in the skill scores of caregivers as measured by SAS at 2 weeks compared to the immediate scores. Conclusion: The VTP was
Dabas, Heena; Sharma, Kamlesh Kumari; Joshi, Poonam; Agarwala, Sandeep
Context: Care of a child having colostomy has not been institutionalized for a long time for economic and administrative reasons. After stoma formation, stoma care has to be provided to the child by caregivers at home. Hence, caregivers need to be provided with ongoing education and support, commencing from preoperative teaching to discharge from the hospital and home care. Aims: The aims of this study were to develop video-based learning resource material and to evaluate its effectiveness in terms of knowledge and skill attainment by caregivers. Settings and Design: The study design was time series, one group pretest and post test. This was conducted among 30 caregivers attending pediatric surgery outpatients and indoor departments of a tertiary level care center. Materials and Methods: A video teaching program (VTP) related to pediatric colostomy was developed and used to teach the caregivers about colostomy care. Pretested and validated knowledge questionnaire, observational checklist, and stoma assessment scale (SAS) were used to assess the knowledge and skills of caregivers before and after the administration of VTP immediately (post test 1) after and 2 weeks (post test 2) after the intervention. Statistical Analysis Used: Repeated measures analysis of variance (ANOVA), Bonferroni correction, Mann–Whitney U test, and Kruskal–Wallis test were used. Results: There were significant increases in knowledge (from 10.9 ± 2.5 to 16.4 ± 1.67 and 15.9 ± 4.02, P = 0.001, maximum score 20) and skill scores as assessed by the observation checklist (from 5.6 ± 2.0 to 9.8 ± 1.6 and 8.6 ± 2.1, P = 0.001, maximum score 12) immediately after and 2 weeks after the VTP. However, a decline in skills was observed at 2 weeks when compared with immediate scores, as measured by the observation checklist. There was no significant increase in the skill scores of caregivers as measured by SAS at 2 weeks compared to the immediate scores. Conclusion: The VTP was effective in
Bateman, Daniel Robert; Brady, Erin; Wilkerson, David; Yi, Eun-Hye; Karanam, Yamini; Callahan, Christopher M
In the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers. The primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants' social networks. The study's secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers. We recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants' Facebook News Feed, allowing participants' Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the
Rosell-Murphy, Magdalena; Bonet-Simó, Josep M; Baena, Esther; Prieto, Gemma; Bellerino, Eva; Solé, Francesc; Rubio, Montserrat; Krier, Ilona; Torres, Pascuala; Mimoso, Sonia
Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). Primary Health Care network (9 PHCTs). Primary informal caregivers of patients receiving home health care from participating PHCTs. Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data
Patrícia Paes Araujo Fialho
Full Text Available OBJECTIVE: It was to examine the effects of a Cognitive-Behavioral Therapy (CBT program administered to family caregivers of dementia patients. METHODS: Forty family caregivers were enrolled in a CBT intervention across eight weekly sessions. Cognitive, functional and behavioral status of patients were evaluated, as well as their own and their family caregivers' perceptions of quality of life. Specific instruments were also applied to evaluate caregiver stress level, coping, anxiety and depression. RESULTS: At the end of the program, family caregivers reported fewer neuropsychiatric symptoms among patients and an improvement in patients' quality of life. In addition, caregivers changed their coping strategies, whereas a significant decrease was observed in their anxiety levels. CONCLUSION: The CBT program employed appears to be a promising and useful tool for clinical practice, displaying positive effects on quality of life and neuropsychiatric symptoms of dementia, as well as proving beneficial for alleviating anxiety and stress in family caregivers.
Li, Mengting; Mao, Weiyu; Chi, Iris; Lou, Vivian W Q
This study examined whether geographical proximity is a predictor of depressive symptoms, and whether family and friend support can moderate the relationship between geographical proximity and depressive symptoms. A survey of 557 adult child primary caregivers was conducted in Shanghai, China in 2013. Geographical proximity was measured as a categorical variable: coresidence, short distance (less than 30 minutes' travel time), and long distance (more than 30 minutes' travel time). Family and friend support were assessed using the Multidimensional Scale of Perceived Social Support. Depressive symptoms were evaluated using the Center on Epidemiologic Studies Depression Scale. Multiple regression analyses and interaction terms were used to test the moderating roles of family and friend support. Adult child caregivers who live more than 30 minutes away from care recipients experienced higher depressive symptoms than coresiding caregivers (β = .114, p support (β = -.408, p support (β = -.235, p support for adult child caregivers.
Jukic P, Nikolina; Gagliardi, Cristina; Fagnani, Donata; Venturini, Claudia; Orlandoni, Paolo
The purpose of this study was to comprehend and describe the views, experiences and adaptations of caregivers who assist older patients treated with Home Enteral Nutrition. The objective was to gather empirical evidence to improve the delivery of Home Enteral Nutrition for old patients taking into account the caregivers' support needs. A qualitative methodology with focus groups as data collection method was used to collect the testimonies of 30 informal and formal caregivers of older patients treated with Home Enteral Nutrition by the Clinical Nutrition Service of INRCA (Ancona) during 2014. Quantitative methodology was used to collect socio-demographic data. Partially modified Silver's "Home Enteral Nutrition Caregiver Task Checklist" was used to identify training needs. The constant comparison method was used to code and categorize data and to develop themes of focus groups. Simple descriptive statistics were used to summarize questionnaires. Five main themes were identified from focus groups: acceptance of the therapy, skill acquisition process, need for psychological and practical support at home from healthcare professionals, lifestyle adaptation, affirmation of life and family. All caregivers testified the initial fear and refusal to manage the nutrition pump and the therapy. They expressed the need to be trained gradually, starting during a patient's hospitalization, and continuing in the community. With reference to their overall QoL, it emerged that informal caregivers suffered mostly from the reduction of their free time while formal caregivers suffered social isolation and psychological burden. For both groups the monthly home visit was the most important element of the HEN service. Informal caregivers highlighted the importance of having their loved ones at home. Unsatisfied training needs were identified by the modified Silver's "Home Enteral Nutrition Caregiver Task Checklist". This qualitative study underlined the challenges and adaptations of
Ong, Hui Lin; Vaingankar, Janhavi Ajit; Abdin, Edimansyah; Sambasivam, Rajeswari; Fauziana, Restria; Tan, Min-En; Chong, Siow Ann; Goveas, Richard Roshan; Chiam, Peak Chiang; Subramaniam, Mythily
The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (β = - 0.14, 95% CI -0.224 to - 0.072, p < 0.05), it did not show a significant moderating effect. Perceived social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.
Harvey-Knowles, Jacquelyn; Faw, Meara H
Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.
Full Text Available Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.
Williams-Hooker, Ruth; Adams, Marissa; Havrilla, David A; Leung, Wing; Roach, Robin R; Mosby, Terezie T
Many pediatric oncology patients undergoing hematopoietic stem cell transplantation (HSCT) require nutritional support (NS) because of their inability to consume adequate caloric intake enough calories orally. Although NS can be provided either enteraly (EN) or parenteraly (PN), EN is the preferred method of NS as long as if the gastrointestinal tract is functioning. In this qualitative study, we determined the type of NS preferences and the reservations of caregivers of pediatric HSCT patients undergoing hematopoietic stem cell transplantation (HSCT) as well as those of health care (HC) providers working on the HSCT unit. A survey was developed and completed anonymously by HC providers and caregivers. The hypothesis was that HC providers and caregivers would prefer PN because it is convenient to use in patients who already have a central line in place. Most caregivers preferred PN to EN, while most HC providers preferred EN to PN. The barrier between EN initiation and caregivers' approval was the caregivers' perception that EN was invasive and painful, most common obstacle for initiation of EN among caregivers was that it hurts/is invasive, while the barrier with HC providers was vomiting and/abdominal pain associated with EN. If caregivers were better educated about NS and the advantages/disadvantages of the different forms of NS, their preferences may change. There have been policy changes at St. Jude have been implemented since this study, and an outpatient dietitian now provides education to caregivers about NS during the pre-evaluation for HSCT. © 2015 Wiley Periodicals, Inc.
Lau, Denys T; Joyce, Brian; Clayman, Marla L; Dy, Sydney; Ehrlich-Jones, Linda; Emanuel, Linda; Hauser, Joshua; Paice, Judith; Shega, Joseph W
Managing and administering medications to relieve pain and symptoms are common, important responsibilities for informal caregivers of patients receiving end-of-life care at home. However, little is known about how hospice providers prepare and support caregivers with medication-related tasks. This qualitative study explores the key approaches that hospice providers use to facilitate medication management for caregivers. Semistructured, open-ended interviews were conducted with 22 providers (14 nurses, four physicians, and four social workers) from four hospice organizations around an urban setting in the midwestern U.S. Based on the interviews, the following five key approaches emerged, constituting how the hospice team collectively helped caregivers manage medications: 1) establishing trust; 2) providing information; 3) promoting self-confidence; 4) offering relief (e.g., provided in-home medication assistance, mobilized supportive resources, and simplified prescriptions); and 5) assessing understanding and performance. Each hospice discipline used multiple approaches. Nurses emphasized tailoring information to individual caregivers and patients, providing in-home assistance to help relieve caregivers, and assessing caregivers' understanding and performance of medication management during home visits. Physicians simplified medication prescriptions to alleviate burden and reassured caregivers using their perceived medical authority. Social workers facilitated medication management by providing emotional support to promote self-confidence and mobilizing resources in caregivers' support networks and the community at large. Hospice nurses, physicians, and social workers identified distinct, yet overlapping, approaches in aiding caregivers with medication management. These findings emphasize the importance of interdisciplinary teamwork among hospice providers. Future research should investigate how common, standardized, effective, and efficient these approaches are in
Wilks, Scott E; Croom, Beth
The study examined whether social support functioned as a protective, resilience factor among Alzheimer's disease (AD) caregivers. Moderation and mediation models were used to test social support amid stress and resilience. A cross-sectional analysis of self-reported data was conducted. Measures of demographics, perceived stress, family support, friend support, overall social support, and resilience were administered to caregiver attendees (N=229) of two AD caregiver conferences. Hierarchical regression analysis showed the compounded impact of predictors on resilience. Odds ratios generated probability of high resilience given high stress and social supports. Social support moderation and mediation were tested via distinct series of regression equations. Path analyses illustrated effects on the models for significant moderation and/or mediation. Stress negatively influenced and accounted for most variation in resilience. Social support positively influenced resilience, and caregivers with high family support had the highest probability of elevated resilience. Moderation was observed among all support factors. No social support fulfilled the complete mediation criteria. Evidence of social support as a protective, moderating factor yields implications for health care practitioners who deliver services to assist AD caregivers, particularly the promotion of identification and utilization of supportive familial and peer relations.
Gutiérrez-Maldonado, José; Caqueo-Urízar, Alejandra; Ferrer-García, Marta; Fernández-Dávila, Paula
Perception of social support and functioning of patients with schizophrenia and their primary caregivers and its relationship to quality of life are described. Forty-five patients and their 45 relatives, treated at the Mental Health Services in Arica, Chile, participated. Both patients and caregivers in the study have a poor perception of social support with regard to extra-family people, as well as a low social integration. However, patients showed adequate capacity to function within their immediate family. Unlike what was found in developed countries, these patients showed moderate levels of quality of life, with a strong relationship with perceptions of the social support they receive from family and significant others and the ability to establish and maintain social contacts. Quality of life of primary caregivers is linked to patients' ability to establish and maintain social contacts within the family group, as in other social instances, such as keeping a job. The results of the study suggest the need to consider the design and application of programs of support for these patients and their caregivers, with the central aim of the social functioning of the above-mentioned patients and their familiar and community integration.
Gelman, Caroline; Sokoloff, Tracey; Graziani, Noel; Arias, Emma; Peralta, Anyelina
We discuss a program designed collaboratively by eight community-based agencies and a school of social work to serve ethnically-diverse caregivers of older adults in an under-resourced area of New York City. The program offered comprehensive assessments, referrals and information, and respite care to maximize use of existing resources and build a stronger web of support for caregivers. Social work and nursing students participated in all aspects of the project, including development, implementation, and evaluation. This level of involvement facilitates a deep understanding of the interconnections among practice, research, policy, and education, and fosters an interest in and commitment to working with older adults and their families.
Barkan, Susan E.; Skinner, Martie; Ben Packard, W.; Cole, Janice J.
Objective To test the feasibility, usability, and proximal outcomes of Connecting, an adaptation of a low-cost, self-directed, family-based substance use prevention program, Staying Connected with Your Teen, with foster families in a randomized, waitlist control pilot study. Method Families (n = 60) fostering teens between 11 and 15 years of age were recruited into the study and randomly assigned into the self-administered program with telephone support from a family consultant (n = 32) or a waitlist control condition (n = 28). Results Overall satisfaction with the program was high, with 100% of parents reporting they would recommend the program to other caregivers and reporting being “very satisfied” or “satisfied with the program. Program completion was good, with 62% of families completing all 91 specified tasks. Analyses of proximal outcomes revealed increased communication about sex and substance use (posttest1 OR = 1.97, and 2.03, respectively). Teens in the intervention vs. the waitlist condition reported lower family conflict (OR=.48), and more family rules related to monitoring (OR = 4.02) and media use (OR = 3.24). Caregivers in the waitlist group reported significant increases in the teen’s positive involvements (partial eta sq = 17% increase) after receiving the intervention. Conclusions Overall, program participation appeared to lead to stronger family management, better communication between teens and caregivers around monitoring and media use, teen participation in setting family rules, and decreased teen attitudes favorable to antisocial behavior. This small pilot study shows promising results for this adapted program. PMID:27891209
Ryynänen, O-P; Nousiainen, P; Soini, E J O; Tuominen, S
The goal of the present work was to measure the efficacy of a multicomponent programme designed to provide tailored support for the caregivers of disabled persons. A total of 135 caregivers-care receiver dyads were randomly divided into an intervention group (n = 66) and a control group (n = 69). One-third of the care receivers were demented, and two-thirds had other diseases. Health centres (publicly funded primary health care systems) in 8 rural and urban communities in southeast Finland. The multicomponent support programme for the caregivers consisted of a 2-week rehabilitation period. The control group received standard care. Continuation of the caregiver and care receiver relationship, care receiver mortality at the 2-year follow-up as well as the health-related quality of life (15D scale) and Zung's depression scale of the caregiver at the 1-year follow-up were evaluated. At the 2-year follow-up, the caregiver-care receiver relationship was terminated for any reason in 11 cases (17%) in the intervention group, and in 25 cases (36%) in the control group. After adjusting, the primary outcome (i.e., termination of care giving for any reason) indicated statistical significance (p = 0.04) with a hazard rate of 1.83 (95% confidence interval 1.03-3.29). With a similar adjustment, the difference in mortality and placement to institutional care between the two groups demonstrated a trend towards statistical significance. The caregivers' health, as related to quality of life and depressive symptoms, remained unchanged in both groups at the 1-year follow-up. These results indicate that a tailored support programme for caregivers may help the caregiver to continue the caregiver-care receiver relationship and delay institutionalization.
Miller, Katherine M; Kabat, Margaret; Henius, Jennifer; Harold, Courtney; Van Houtven, Harold
Few studies have explored the health effects of caregiving for post-9/11 veterans who have been traumatically injured, have traumatic brain injuries, or have post-traumatic stress disorder. Post-9/11 veterans and their caregivers tend to be younger than veterans who served exclusively prior to 9/11. In response to the needs of caregivers, Public Law 111-163, the Caregivers and Veterans Omnibus Health Services Act of 2010, was passed, providing unprecedented support for informal caregivers of veterans. This support includes a monthly stipend and health insurance for caregivers who meet eligibility criteria. The uptake in these support services, and the resulting cost of services, has far surpassed expectations. As the Department of Veterans Affairs continues to provide caregiver support services, it is essential to determine the value and direct impact of the services provided to caregivers and veterans.
Huang, Chiung-Yu; Sousa, Valmi D; Perng, Shao-Jen; Hwang, Mei-Yi; Tsai, Chun-Ching; Huang, Mei-Huang; Yao, Shu-Ying
This study examined the relationships among stressors, social support, depressive symptoms and the general health status of Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Caring for a disabled or cognitively impaired person can be extremely stressful and often has adverse effects on caregivers' health. While research on caregiving in Taiwan has examined caregivers' characteristics, caregivers' need and caregivers' burden in caring for older people in general, little is known about Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Cross-sectional, descriptive correlation design. Data were obtained from a convenience sample of 103 Taiwanese informal caregivers in the South of Taiwan and analysed using descriptive statistics, Pearson's correlations, multiple and hierarchical regressions and t-tests. Caregivers who had lower household incomes and were taking care of individuals with more behaviour problems had more depressive symptoms. In addition, caregivers who were older and were taking care of individuals with more behaviour problems had worse general health. Caregivers who had more emotional support had less depressive symptoms. Caregivers of persons with Alzheimer's disease had more depressive symptoms and worse general health than caregivers of persons with stroke. Only emotional support moderated the relationship between one of the stressors (household income) and depressive symptoms. The findings of this study may be helpful for nurses and other health care professionals in designing effective interventions to minimise the negative impacts of stressors on the psychological and general health of caregivers in Taiwan.
Markoulakis, R; Turner, M; Wicik, K; Weingust, S; Dobbin, K; Levitt, A
Roles for peer support workers are increasingly recognized as a valuable component of mental health and addictions (MHA) services. In youth MHA care, caregivers are often closely involved in finding and accessing services and may also require support for themselves, yet caregiver peer support is not readily available in existing service delivery models. In order to understand the potential role and value of a caregiver peer support worker in a Family Navigation service, a descriptive qualitative study was conducted to explore the needs and potential value of a peer worker from caregiver client perspectives. Study findings indicate that a caregiver peer support worker can provide support for engaging in the caregiving role, utilize lived experience as a skill, and complement navigation support through lived experience. The discussion highlights implications for the implementation of a caregiver peer role at a family-focused service as well as implications for peer work within the MHA system.
Glasdam, Stinne; Timm, Helle; Vittrup, Rikke
and evaluate these interventions. A systematic literature review was conducted, including previous reviews and controlled studies from 1997 to 2007 of interventions targeting caregivers of adults with stroke, diabetes, cardiovascular disease, and cancer.Ten out of the 32 studies included found...
Ray, Robin A; Street, Annette F
This article introduces the concept of socio-connective trust, the synapse between the social structures and processes that underpin relationships in supportive care networks. Data from an ethnographic case study of 18 informal caregivers providing in-home care for people with life-limiting illness were analysed drawing on theoretical concepts from the work of Giddens and writings on social capital, as well as the construction of trust in the caregiving literature. While conceptions of trust were found to contribute to understanding supportive care relationships, they did not account for the dynamic nature of the availability and use of support networks. Instead, informal caregivers undertook ongoing reflexive negotiation of relationship boundaries in response to their own conception of the current situation and their perception of trust in their relationships with the various members of the support network. The concept of socio-connective trust describes the movement and flow of the flexible bonds that influence relationships among care networks and determine the type and range of support accessed by informal caregivers. Understanding the complexities of socio-connective trust in caregiving relationships will assist health and social care workers to mobilize relevant resources to support informal caregivers.
Boots, L M M; de Vugt, M E; van Knippenberg, R J M; Kempen, G I J M; Verhey, F R J
Because of the expected increase in the number of dementia patients, the unlikelihood of a cure in the near future, and the rising cost of care, there is an increasing need for effective caregiver interventions. Internet interventions hold considerable promise for meeting the educational and support needs of informal dementia caregivers at reduced costs. The current study aims to provide an overview of the evidence for the effectiveness, feasibility, and quality of Internet interventions for informal caregivers of people with dementia. A systematic literature search of five scientific databases was performed, covering literature published up to 10 January 2013. Twelve studies were identified. The quality of the included studies was assessed according to the Cochrane level of evidence and the criteria list of the Cochrane Back Review Group. The intervention types, dosage, and duration differed widely, as did the methodological quality of the included studies. The overall level of evidence was low. However, the results demonstrate that Internet interventions for informal dementia caregivers can improve various aspects of caregiver well-being, for example, confidence, depression, and self-efficacy, provided they comprise multiple components and are tailored to the individual. Furthermore, caregivers could benefit from interaction with a coach and other caregivers. Internet interventions for informal dementia caregivers may improve caregiver well-being. However, the available supporting evidence lacks methodological quality. More randomized controlled studies assessing interventions performed according to protocol are needed to give stronger statements about the effects of supportive Internet interventions and their most promising elements. Copyright © 2013 John Wiley & Sons, Ltd.
Şahin, Zümrüt Akgün; Tan, Mehtap
Loneliness is a significant psychosocial concern for patients with cancer, and depression may be an antecedent to loneliness. To date, no studies have directly addressed the relationship of loneliness, depression, and social support among Turkish patients with cancer and their caregivers. The emotional responses that result from a cancer diagnosis vary and may include anxiety, anger, frustration, or depression. Because of the unexpected demands and emotions thrust on them, the caregivers of patients with cancer may be just as likely to experience loneliness or depression following a cancer diagnosis. As a result, this study sought to examine that relationship among a sample of 60 patients with cancer and 60 caregivers.
Technology-based support groups for caregivers are often more accessible and convenient than attending face-to-face support groups. In this review the author examines the effectiveness of technology-based social support groups on reducing care burden among caregivers of individuals with dementia. Studies were identified through 10 online bibliographic databases. (a) published before June 2013, (b) rigorous study design, (c) English language, (d) peer-reviewed journals, (e) home-based care, (f) telephone and/or Internet support group utilized at home, and (g) outcome measure of care burden or caregiver stress. Technology-based social support groups enjoy a modest level of positive outcomes, appear to be low cost, and pose little risk of harmful effects while reducing care burden in caregivers. Based on the five studies reviewed, technology-based support group services have demonstrated a positive impact on reducing care burden among dementia caregivers; and improve support networks similarly to the way face-to-face support groups connect participants.
Shata, Zeinab Nazeeh; Amin, Marwa R; El-Kady, Heba M; Abu-Nazel, Mervat W
Unlike other chronic diseases, dementia caregiving is associated with enormous psychological burden, which stresses the need for caregivers-directed psychosocial interventions. Aim: This randomized controlled trial (RCT) was conducted to evaluate the short-term efficacy of a multi-component psychosocial intervention program for informal caregivers of persons with neurocognitive disorders in Alexandria, Egypt. Informal caregivers (120) were randomly assigned into intervention and control groups. The intervention group (60) participated in a multi-component program of 8 sessions, including psycho-education, group cognitive-behavioral therapy, and group social support. Program primary outcomes were assessed after program termination (post-1), and three months later (post-2). Measured outcomes included caregivers' knowledge, depression and anxiety symptoms, and perceived burden. Caregivers' depression, anxiety, and perceived burden demonstrated significant drop at post-1, and post-2 compared to the control group ( P psychosocial intervention for caregivers of persons with neurocognitive disorders demonstrated a short-term efficacy in reducing their burden, depression, and anxiety, as well as improving caregivers' knowledge. However, further research is needed to investigate long-term efficacy of the intervention.
Cameron, Jill I; Naglie, Gary; Green, Theresa L; Gignac, Monique A M; Bayley, Mark; Huijbregts, Maria; Silver, Frank L; Czerwonka, Anna
Examine feasibility of conducting a randomized controlled trial of the Timing it Right Stroke Family Support Program (TIRSFSP) and collect pilot data. Multi-site mixed method randomized controlled trial. Acute and community care in three Canadian cities. Caregivers were family members or friends providing care to individuals who experienced their first stroke. The TIRSFSP offered in two formats, self-directed by the caregiver or stroke support person-directed over time, were compared to standard care. Caregivers completed baseline and follow-up measures 1, 3 and 6 months post-stroke including Centre for Epidemiological Studies Depression, Positive Affect, Social Support, and Mastery Scales. We completed in-depth qualitative interviews with caregivers and maintained intervention records describing support provided to each caregiver. Thirty-one caregivers received standard care (n=10), self-directed (n=10), or stroke support person-directed (n=11) interventions. We retained 77% of the sample through 6-months. Key areas of support derived from intervention records (n=11) related to caregiver wellbeing, caregiving strategies, patient wellbeing, community re-integration, and service delivery. Compared to standard care, caregivers receiving the stroke support person-directed intervention reported improvements in perceived support (estimate 3.1, P=.04) and mastery (estimate .35, P=.06). Qualitative caregiver interviews (n=19) reflected the complex interaction between caregiver needs, preferences and available options when reporting on level of satisfaction. Preliminary findings suggest the research design is feasible, caregivers' needs are complex, and the support intervention may enhance caregivers' perceived support and mastery. The intervention will be tested further in a large scale trial. © The Author(s) 2014.
for Alzheimer’s as they age.66 The caregiver and service member’s family situation and social support system also affect the dynamic. For instance...services for families . The resourcefulness, perseverance, and other personal characteristics of individual caregivers also affect the resources...public service of the RAND Corporation. CHILDREN AND FAMILIES EDUCATION AND THE ARTS ENERGY AND ENVIRONMENT HEALTH AND HEALTH CARE INFRASTRUCTURE AND
Lau, Denys T.; Joyce, Brian; Clayman, Marla L.; Dy, Sydney; Ehrlich-Jones, Linda; Emanuel, Linda; Hauser, Joshua; Paice, Judith; Shega, Joseph W.
Context Managing and administering medications to relieve pain and symptoms are common, important responsibilities for informal caregivers of patients receiving end-of-life care at home. However, little is known about how hospice providers prepare and support caregivers with medication-related tasks. Objectives This qualitative study explores the key approaches that hospice providers employ to facilitate medication management for caregivers. Methods Semi-structured, open-ended interviews were conducted with 22 providers (14 nurses, four physicians, and four social workers) from four hospice organizations around an urban setting in the Midwest U.S. Results Based on the interviews, the following five key approaches emerged, constituting how the hospice team collectively helped caregivers manage medications: 1) establishing trust; 2) providing information; 3) promoting self-confidence; 4) offering relief (e.g., provided in-home medication assistance, mobilized supportive resources, and simplified prescriptions); and 5) assessing understanding and performance. Each hospice discipline employed multiple approaches. Nurses emphasized tailoring information to individual caregivers and patients, providing in-home assistance to help relieve caregivers, and assessing caregivers’ understanding and performance of medication management during home visits. Physicians simplified medication prescriptions to alleviate burden and reassured caregivers using their perceived medical authority. Social workers facilitated medication management by providing emotional support to promote self-confidence and mobilizing resources in caregivers’ support networks and the community at large. Conclusion Hospice nurses, physicians, and social workers identified distinct, yet overlapping, approaches in aiding caregivers with medication management. These findings emphasize the importance of teamwork among hospice providers. Future research should investigate how common, standardized, effective
Alyne Kalyane Câmara de Oliveira
Full Text Available In this study, we aimed to describe the levels of stress and perceived social support for caregivers of children with cerebral palsy (CP, as well as investigate the relationship between stress, social support, and variables related to caregivers, the environment and children, namely: the number of children, education level of caregivers, family income, behavior, and the child’s motor level. This study comprised 50 children with CP between 3 and 7.5 years old, their 50 caregivers, and 25 rehabilitation professionals who care for children in health institutions from the countryside of São Paulo state, Brazil. The following measuring instruments were used: the Gross Motor Function Classification System for Cerebral Palsy, the Lipp’s Inventory of Stress Symptoms in Adults, the Social Support Questionnaire, and a form identifying the participants. Data were analyzed using descriptive and inferential statistics by the following tests: Chi-square, Fisher exact, Mann-Whitney, Kruskal-Wallis, and Odds Ratio. The results showed stress among the participating caregivers (66%, with predominance of the resistance phase (93.9% and psychological symptoms (69.7%, low perceived social support for caregivers, concomitant with an adequate satisfaction with the support received, as well as significant relationships of stress versus social support (p = 0.017 and education level versus social support (p = 0.037. The data allow analysis of the relationship between the variables investigated and about the impact of having a child with CP in the family regarding the physical, emotional and psychological well-being of caregivers, besides providing subsidies to think of strategies at different levels of care for families of children with disabilities.
Borneman, Tami; Sun, Virginia; Williams, Anna Cathy; Fujinami, Rebecca; Del Ferraro, Catherine; Burhenn, Peggy S; Irish, Terry; Zachariah, Finly; van Zyl, Carin; Buga, Sorin
Consistent with the recommendations of the Institute of Medicine Report on quality cancer care, attention to symptom management and quality of life concerns of patients with lung cancer should be addressed throughout the disease trajectory. As part of a NCI-funded Program Project grant, this paper reports on the patient and family caregiver education component of a nurse-lead, tailored palliative care intervention for patients with early (I-III, n=130) and late (IV, n=142) stage lung cancer. Patients and family caregivers received 4 separate educational sessions organized around the Quality of Life model domains (physical, psychological, social, and spiritual well-being). Each patient and caregiver was presented at a weekly interdisciplinary case conference which also informed the educational sessions. Based on needs and team suggestions, an individualized palliative care plan was created and a tailored educational intervention was designed based on topics chosen by each participant. The most common topics chosen by patients in each domain were fatigue, worry and fear, social support/isolation, and hope. Family caregivers most commonly chose fatigue, worry and fear, communication, and purpose and meaning in life. The mean time spent in each teaching session ranged from 31 to 44 minutes for patients and 25 to 35 minutes for family caregivers. There is a vital need for interdisciplinary palliative care interventions for patients across all stages and across the disease trajectory. Nurses are vital to integrating palliative care into routine care. Providing a tailored educational intervention is an important aspect of palliative care for patients and family caregivers. This paper focuses on the process of the tailored educational intervention.
Kovaleva, Mariya; Blevins, Lindsey; Griffiths, Patricia C; Hepburn, Kenneth
The population of individuals living with dementia and their caregivers and the need to provide caregiver training will increase in the next several decades. In-person caregiver educational programs are delimited by logistical and resource boundaries that could be overcome with online programs. The purpose of this qualitative descriptive study was to explore the acceptability and ways to improve the content and delivery of an online 7-week psychoeducational pilot program-Tele-Savvy. Thirty-six caregivers who completed the pilot were interviewed about their experience with Tele-Savvy and their suggestions for its improvement. Conventional content analysis allowed for the identification of three themes: barriers and facilitators to establishing rapport with participants and instructors, content enrichment and diversification, and structural refinement. These lessons learned directly from the caregivers provide evidence to guide the refinement of analogous online interventions and highlight the need for their wider availability.
Estíbaliz Amaro Martín
Full Text Available Deinstitutionalization processes in recent times have led to a new age in relations between family and mental health professionals. Care professionals were replaced, after the psychiatric reform, for care carried out by the family without the knowledge, information and skills to assume these functions. This is the situation of many families of patients with schizophrenia.Disabling features of schizophrenia usually cause depends on their families, who take care with the consequent impact on their lives. Psychosocial interventions assessing their work and want to build an alliance with them by giving them skills and coping mechanisms to reduce adverse family atmosphere, anticipate and solve problems and reduce the expressions of anger and guilt keeping appropiate expectations. However, these actions must be enforced by providing main caregivers with the skills that enable them to gain control, this is the main target of psychoeducational programs.Today there are many people in favour of such interventions in the early stages of schizophrenia. However, it is no clear how far development of these programs is supported by evidence of effectiveness. So it has proposed a psychosocial and psychoeducational program aimed at main caregivers of patients with schizophrenia in early stages. This program will be led by a psychiatric nurse in collaboration with other professionals in the interdisciplinary team; psychiatrist, clinical psychologist and social worker. It has developed clinical trial with a control group who will receive the gide for families, caregivers and people affected, "Cómo afrontar la esquizofrenia," and an experimental group will receive, in addition to the guide, the group intervention sessions.
Guerrero Caballero, Laura; Ramos Blanes, Rafel; Alcolado Aranda, Ana; López Dolcet, Maria Josep; Pons La Laguna, Juan Lucas; Quesada Sabaté, Miquel
To improve quality of life, anxiety and depression in caregivers of patients in home care. We performed a randomized clinical trial in 79 main caregivers (39 control group and 40 intervention group) of patients in the home care program of a primary care health center between 2000 and 2001. Quality of life, anxiety and depression were measured by the COOP/WONCA and Goldberg questionnaires, respectively, at the beginning and at the end of the study. Interventions consisted of two medical visits to take a bio-psychosocial history of the caregiver and a nurse visit for health education. Two letters, adapted to each carer's needs, were sent and two telephone calls were made. The intervention group scored significantly better than the control group in relation to WONCA-feelings (p=0.03), WONCA-social activities (p=0.05), and WONCA-quality of life (p=0.02). A short multidisciplinary intervention program adapted to routine consultations could prevent deterioration in caregivers' quality of life.
Danucalov, M. A. D.; Kozasa, E. H.; Ribas, K. T.; Galdur?z, J. C. F.; Garcia, M. C.; Verreschi, I. T. N.; Oliveira, K. C.; Romani de Oliveira, L.; Leite, J. R.
Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. the aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program-YCMP group) (n = 25) ...
Shi, J; McCallion, P; Ferretti, L A
The Chronic Disease Self-Management Program (CDSMP) was developed to advance participants' self-care of chronic illness and may be offered to both individuals with chronic conditions and their caregivers. Previous studies of CDSMP have identified multiple resulting health benefits for participants as well as factors associated with participants' completion rates. This study investigated differences on these issues between caregiving and non-caregiving participants. Secondary analysis using regression analysis to predict the outcome. Baseline data were collected directly from adult (over 18 years) participants of CDSMP workshops in New York State from 2012 to 2015 (n = 2685). Multi-level logistic regression analysis was used to compare the difference on completion of workshops (attended four or more of sessions) and contributing factors with the independent variable of whether participants provided care/assistance to a family member or friends with long-term illness or disability. Additional individual-level variables controlled for in the model were age, gender, race/ethnicity, living arrangement, education, the number of chronic conditions and disabilities; as were workshop-level characteristics of class size, language used, workshop leader experience, location urbanity and delivery site type. Participants who provided care to family or friends were 28% more likely to complete the workshop compared with those who did not (odds ratio = 1.279, P motivation to complete the workshops with greater benefits. Agencies offering CDSMP should encourage caregivers to attend. Copyright © 2017. Published by Elsevier Ltd.
Full Text Available Cynthia R Collins Loyola University New Orleans, College of Social Sciences/School of Nursing, New Orleans, LA, USA Abstract: Emerging practice research on filial sources of health care support has indicated that there is a growing trend for sons to assume some responsibility for the health care needs of their aging parents. The purpose of this work is to propose that outcomes observed through a secondary analysis of data from a previous mixed methods research project, conducted with a sample of 60 elderly women residing in independent living centers, supports this concept in elder care. The present study is a retrospective interpretation utilizing the original database to examine the new question, “What specific roles do sons play in caregiving of their elderly mothers?” While daughters presently continue to emerge in existing health care studies as the primary care provider, there is a significant pattern in these data for older patients to depend upon sons for a variety of instrumental activities of daily living. As the baby-boomers age, there is more of cohort trend for their families to be smaller, adult daughters to be employed, and for adult children to be more geographically mobile. These factors may combine to make health care support networks more limited for the current aging population, challenging the elderly and their health care providers to revisit the cultural gender norms that are used to identify caregivers. Keywords: sons as caregivers, male caregivers, aging parents, filial support, informal caregivers
Czerwonka, Anna I; Herridge, Margaret S; Chan, Linda; Chu, Leslie Michele; Matte, Andrea; Cameron, Jill I
Survivors of complex critical illness and their family caregivers require support during their recovery, rehabilitation, and return to community living; however, the nature of these supports and how they may change over time remain unclear. Using the Timing It Right framework as a conceptual guide, this qualitative pilot study explored survivors' and caregivers' needs during the episode of critical illness through their return to independent living. Five survivors and seven family caregivers were recruited and consented from the main Towards RECOVER pilot study, designed to characterize the long term outcomes of survivors of the ICU who have been mechanically ventilated for more than one week. Using the Timing It Right framework, we prospectively conducted qualitative interviews to explore participants' experiences and needs for information, emotional support, and training at 3, 6, 12, and 24 months after intensive care unit (ICU) discharge. We completed 26 interviews, which were audio recorded, professionally transcribed, checked for accuracy, and analyzed using framework methodology. In this small pilot sample, caregiver and patient perspectives were related and, therefore, are presented together. We identified 1 overriding theme: survivors do not experience continuity of medical care during recovery after critical illness. Three subthemes highlighted the following: (1) informational needs change across the care continuum, (2) fear and worry exist when families do not know what to expect, and (3) survivors transition from dependence to independence. Interventions designed to improve family outcomes after critical illness should address both survivors' and caregivers' support needs as they change across the illness and recovery trajectory. Providing early intervention and support and clarifying expectations for transitions in care and recovery may decrease fears of the unknown for both caregivers and survivors. Ongoing family-centered follow-up programs may also
Colvin, Jan; Chenoweth, Lillian; Bold, Mary; Harding, Cheryl
We explored the perceptions of caregivers of older adults using Internet-based social support networks regarding the unique advantages and disadvantages of online social support. Participants were recruited with permission of Web owners through 15 Web sites that offered social networks, and responses from 63 electronically submitted surveys were…
Wright, Debra L.; Aquilino, William S.
Interrelationships among elderly couples' reciprocity of emotional support, wives' experience of caregiving for husbands with disabilities, and wives' marital happiness are explored. Level of functioning and type of disability, and levels of exchange of emotional support were measured. Regression models are presented and relationships among…
Chiatti, Carlos; Rimland, Joseph M; Bonfranceschi, Franco; Masera, Filippo; Bustacchini, Silvia; Cassetta, Laura
The paper describes recruitment results and characteristics of the UP-TECH clinical trial sample, including level of care services use, informal caregiver burden and its determinants. UP-TECH is designed to test innovative care solutions for community-dwelling patients with moderate stage Alzheimer's disease and their caregivers in Italy. Four hundred and fifty patient-caregiver dyads were randomized into three arms receiving different combinations of services, composed of case management interventions, nurse visits, assistive technology and educational brochures. The research nurses administered a questionnaire comprising an in-depth socio-demographic assessment and several clinical scales, such as Novak's Caregiver Burden Inventory. Analyses of baseline data were conducted using uni- and bi-variate statistics. Linear regressions were computed to identify de-confounded correlates of caregiver burden. Four hundred and thirty-eight patient-caregiver dyads were recruited and randomized. In our sample, patients are predominantly women (71.5%), with an average age of 81.5 years and a mean Mini-Mental State Examination score of 16.2. Caregivers are mostly women (66.2%) and offspring (55.7%), with a mean caregiver burden score of 27.6. They provide more than 50 hours of care per week, while receiving an almost negligible support from public services. Factors associated with caregiver burden are female gender, kinship and the patient's behavioral disturbances. The most important factor associated with lower burden is the employment of a live-in care worker. The paper provides a comprehensive description of moderate stage Alzheimer's disease patients and their caregivers, suggesting useful markers of caregiver burden. The well-balanced randomization assures the reliability of the study data-set for prospective evaluation of care strategies.
Barrera-Ortiz, Lucy; Carrillo-González, Gloria M; Chaparro-Díaz, Lorena; Afanador, Natividad P; Sánchez-Herrera, Beatriz
The study was aimed at determining the effectiveness of social support using information and communication technology (ICT) for family caregivers regarding people suffering chronic disease. This descriptive exploratory study involving 144 family caregivers for people suffering from chronic disease was carried out in Bogota during 2008 and 2009. It was carried out in three phases: planning and designing ICT strategies (including a pilot trial and selecting the target population), implementing the ICTs in support of the target population and data analysis regarding implementing the ICTs, with a description of the indicators of structure and process for ICT use and results of ICT use in providing social support. G. Hilbert's Social support in chronic disease inventory (SSCI) was used for measurements, including the following categories: personal interaction, guide, feedback, tangible help and social interaction. ICT-based intervention was effective and proved positive for social support for most family caregivers. While analysing the different categories, the guide, information and instruction and personal interaction received high scores while feedback and social interaction received lower ones. Identifying and designing appropriate ICTs for family caregivers should be continued and supported in different contexts and tools such as internet and on-line social support networks should continue being explored.
Sandra Lucrecia Romero Guevara
Full Text Available Introduction: The increase in chronic diseases has put in evidence the problem between the supply and demand for health services, generating the displacement of care to home and the overload to family caregivers. Objective: To determine the social support perceived by family caregivers of people with chronic disease. Materials and Methods: A transversal study was conducted and the Inventory of Social Support on Chronic Disease of Hilbert instrument was used with 129 family caregivers of people with chronic disease seen in a hospital of third level of attention. Results: The caregivers are primarily women (89.9%. The average score of the scale was of $110.7, standard deviation = 38.1. Significant differences were found in the schooling (p=0.030, socioeconomic status (p=0.013 and the housing to the patient (p=0.010. Conclusion: The caregivers reported to be unhappy with perceived social support and this perception was related to the socio-economic conditions of the people.
Lai, Daniel W L
One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden.
Conclusion: The caregivers for dementia patients may have sustained benefit of reducing burden, decreasing psychological morbidity and enhancing psychological wellbeing after the intensive psycho-educational training programs' intervention.
specific aim, research or study questions, and/or hypothesis : The purpose of the MSBP was to improve the quality of life of military family caregivers by...adopting a healthier lifestyle through healthier eating, meditating , and in exercising. Cognitive changes involved an improved ability to...subjective). Improvement was shown by 97.4% of caregivers who participated in the study with 61% showing improvement on all measures tested .” The
Diwan, Sadhna; Hougham, Gavin W; Sachs, Greg A
Programs that provide palliative care to individuals with dementia, which is a progressive terminal illness, are likely to encounter different issues (e.g., management of problem behaviors, caregiver strain extending over years) from those typically addressed by hospice programs. Little research is available on palliative care for individuals with dementia who live in the community. This study examines predictors of types of strain experienced by caregivers of community-dwelling patients with dementia enrolled in a unique demonstration program titled Palliative Excellence in Alzheimer Care Efforts (PEACE), which moved palliative care "upstream," integrating palliative care into the primary care of patients with dementia. Data were collected through structured, face-to-face interviews with 150 community-dwelling, predominantly African American patient-caregiver dyads who were enrolled in the PEACE program. Established measures, including the Caregiver Strain Index, the Revised Memory and Behavior Problems Checklist, and the Katz Index of Activities of Daily Living, were used in addition to other measures assessing caregiver, patient, and situational characteristics. Factor analysis of the Caregiver Strain Index revealed three dimensions of strain (role, personal, and emotional) related to caregiving. Using a stress process model, regression analyses examined stressors and resources related to patient, caregiver, and support system characteristics in predicting these three dimensions of strain among caregivers. Patient problem behaviors predicted all types of caregiver strain. Perceived lack of support from the health care team predicted personal and emotional strain, whereas higher income, surprisingly, predicted role strain. Patient functional limitations predicted personal and role strain. Findings suggest that effective palliative care programs for patients with dementia need to understand and address the various sources and types of caregiver strain; provide
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Team, Victoria; Markovic, Milica; Manderson, Lenore
In Australia, rapid population ageing, and government efforts to support people who are chronically ill, elderly or with disabilities to live in their own homes, has led to the primary responsibility of care being undertaken by families. Through its social policies, the Australian government provides income and other types of support to informal caregivers. This article explores how Australian social policy and women's understanding of their roles impact on their access to welfare support. Qualitative research was conducted in Melbourne between February and June 2006. In-depth interviews were undertaken with eight Russian-speaking women involved in caregiving, purposively recruited through ethnic associations, and with four community service providers. Women based their expectations of the gendered and private nature of their role on the social policies in countries of their origin and, hence, did not attempt to access welfare support unless they were referred by health and welfare professionals. In addition, poor referral by professionals, influenced by past societal attitudes that caregiving is a gendered role, contributed to women's limited access to welfare benefits. Changes in the implementation of social policy are proposed to increase caregivers' access to welfare support and efficient utilisation of existing resources.
Yoo, Eun-Kwang; Jeon, Sanghee; Yang, Jeong-Eun
The purpose of this study was to develop and evaluate the effects of a support group intervention on the burden of primary family caregivers of stroke patients. A nonequivalent control group pretest-posttest design was used. The subjects were 36 primary family caregivers of stroke patients [experimental(N=18) and control(N=18) groups] in a neurosurgery ward of a university hospital. The experimental group members participated in six sessions of a support group intervention for two weeks and the degree of their caregiving burden was evaluated. Data was analyzed by Chi-square tests, t-tests, and paired t-tests using SPSS 10.0. The experimental group had a significantly lower total burden score (t=2.061, p= .047)and sub-scales of emotional(t=-3.319, p= .002), time-dependent(t=-2.045, p= .049) and developmental(t=-2.656, p= .012) burden scores than the control group, while no significant differences were found in physical, social or financial burden scores between the two groups. Within the experimental group, there was a significant decrease in physical(t=2.507, p= .023), emotional(t=4.754, p= .000), social(t=2.932, p= .009), time- dependent(t=5.015, p= .000) and developmental(t=7.541, p= .000) burden scores but not the financial burden score. The results suggest that a support group intervention can be utilized as an effective nursing program to reduce the burden of primary family caregivers of stroke patients.
van der Voort, T Y G; Goossens, P J J; van der Bijl, J J
This study was aimed to highlight the factors which influence experienced burden, coping and needs for support of caregivers for patients with a bipolar disorder. Research articles meeting content and methodological quality criteria from January 1995 through October 2005 were reviewed. High objective and subjective burden is experienced by these caregivers. Subjective burden is extremely influenced by illness beliefs. High burden is associated more with severity of symptoms (than diagnosis), difficulties in the relationship with patient, lack of support and stigma. Coping is influenced by appraisal and burden. Different phases in the process of caregiving require different coping mechanisms. Little research is available on effectiveness of coping mechanisms and needs for support. Suggestions are nevertheless found in the literature for professional support. Caregivers of patients with a bipolar disorder experience high burden and try to cope in different ways. Little research is available on coping styles and needs for support. However, recommendations can be made to increase support for these caregivers.
Moscato, Alba; Varescon, Isabelle
Very little research is made on professional home caregivers in support of seniors, especially those dealing with alcohol misuse. The aim of this study was to investigate the relationships between professional home caregivers and seniors with alcohol misuse, in terms of job satisfaction, professional life and emotional exhaustion. 99 professional home caregivers completed a professional data questionnaire (ESVP) and an inventory of professional burnout (MBI). Demographic and professional data, as well as dimensions of professional life satisfaction and professional exhaustion questionnaires were analyzed. Out of the 99 participants, 36 professional home caregivers reported difficulties dealing with alcohol misuse in seniors. The mean age of the home caregivers was 35 years old and half of them did not receive any training for support. The majority of them qualified the relationship with the aged as "distant and nonexistent". In contrast, most of them were satisfied with regard to the relationship with the relatives of the subjects, and were almost as many to call it "cordial" as well as "cold distant, non-existent". Job satisfaction was positively correlated with the satisfaction of the relationship with the relatives. Emotional exhaustion was negatively correlated with their job satisfaction in the support of the subjects. This study is, to our knowledge, the first one to highlight the importance for professional home caregivers to have good relationships with the relatives of seniors with alcohol misuse. Research in this area is scarce, despite the development of home care for the elderly, whatever their pathologies, and at the early start of a French ministerial plan on society's adaptation to ageing.
Lin, Lan-Ping; Lin, Pei-Ying; Chu, Cordia M.; Lin, Jin-Ding
Although many previous studies have begun to address the reproductive health needs of women with intellectual disabilities; however, the supportive behaviors of caregivers to assist their reproductive health is not well understood. Data from a cross-sectional survey of ""2009 National Survey on Reproductive Health Care Needs and Health…
Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard
BACKGROUND Informal caregivers who perform at-home care of older people with dementia might have feelings of a meaningless existence, burden, anxiety, stress and fatigue. Support groups are considered an especially effective and economical way to relieve informal caregivers’ stress and burden...
Chayu, Tami; Zur, Rabina; Kreitler, Shulamith
The purpose of the study was to examine the need for support groups in nephrology nurses (NN) in Israel. A questionnaire with 10 questions and demographic background information was administered to nephrology nurses in different hospitals and different parts of the country. Out of 350 distributed questionnaires, 305 nurses responded. The findings showed that there is a need for support groups among NN in Israel. Conclusions--It is necessary to organise support groups for nurses in every dialysis unit.
Mayara Barbosa Sindeaux Lima
Full Text Available Abstract Stress and social support are relevant variables for understanding the impact of disability on the care relationship. Thus, this study investigates the association between the parental stress index, social support indicators, and the sociodemographic variables of caregivers of children with cerebral palsy in a capital city of the Eastern Amazon. The following instruments were applied to 100 caregivers: the Sociodemographic Inventory, the Gross Motor Function Classification System, the Parenting Stress Index, and the Medical Outcomes Study Social Support Survey. For data analysis, descriptive statistics were used, in addition to techniques of multivariate analysis. It was found that most participants had high parental stress and a high perception of social support. Specific aspects of the perception of social support and sociodemographic indicators were associated with stress. This knowledge favors the design of more assertive interventions because it outlines the aspects of these variables that appear to have a more effective impact on parental stress.
Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard; Bjerrum, Merete Bender
Informal caregivers who perform at-home care of older people with dementia might have feelings of a meaningless existence, burden, anxiety, stress and fatigue. Support groups are considered an especially effective and economical way to relieve informal caregivers' stress and burden, although it is unclear if participating in group meetings produces a meaningful outcome for the informal caregiver. To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. Informal caregivers of older adults aged 65 years and over with dementia. The informal caregiver was a family member, and care was performed at home. How the informal caregivers perceived the meaningfulness of participating in support groups. The setting was all locations where support groups for informal caregivers were held and studied. TYPES OF STUDIES: Studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. TYPES OF OUTCOMES: Subjective accounts of the informal caregivers' perceptions of the meaningfulness associated with participating in support groups. Beliefs, benefits, rewards and attitudes related to a caregiver's experiences as a participant in support groups and in the role as caregiver. The perception by informal caregivers of participating in support groups as a way to release stress. The search aimed at finding published and unpublished studies in English, German, Danish, Swedish and Norwegian, and was unrestricted by time. Eleven electronic databases and eleven websites were searched. Methodological quality of the qualitative papers was assessed independently by two reviewers using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Qualitative data were extracted from papers included in the review using the standardized data
Pynoos, Jon; Ohta, Russell J.
The home is clearly the major setting in which care is provided to individuals suffering from Alzheimer's disease. The Caring Home Program was a multi-disciplinary program designed to complement existing efforts to assist caregivers (N=12) with the in-home care of Alzheimer's disease patients. The program components consisted of an assessment of…
Kageyama, Masako; Yokoyama, Keiko; Nakamura, Yukako; Kobayashi, Sayaka
A family peer-education program for mental disorders was developed in Japan, similar to existing programs in the United States and Hong Kong. Families that serve as facilitators in such programs may enhance their caregiving processes and, thereby, their well-being. This study's aim was to describe how families' caregiving experiences change, beginning with the onset of a family member's mental illness, through their involvement in a family group or peer-education program as participants then facilitators. Thus, this study was conducted in a family peer-education program for mental disorders in Japan. Group interviews were conducted with 27 facilitators from seven program sites about their experiences before, during, and after becoming facilitators. Interview data were coded and categorized into five stages of caregiving processes: (1) withdrawing and suppressing negative experiences with difficulty and regret; (2) finding comfort through being listened to about negative experiences; (3) supporting participants' sharing as facilitators; (4) understanding and affirming oneself through repeated sharing of experiences; and (5) finding value and social roles in one's experiences. The third, fourth, and fifth stages were experienced by the facilitators. The value that the facilitators placed on their caregiving experiences changed from negative to positive, which participants regarded as helpful and supportive. We conclude that serving as facilitators may improve families' caregiving processes. © 2015 Family Process Institute.
Tramonti, Francesco; Bonfiglio, Luca; Di Bernardo, Carolina; Ulivi, Chiara; Virgillito, Alessandra; Rossi, Bruno; Carboncini, Maria Chiara
Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers' distress are constantly increasing, less information is available about the role of family functioning. Thirty caregivers of hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview was performed for the evaluation of quality of life. Family cohesion and adaptability positively correlated with caregivers' quality of life and perceived social support. Partner caregivers' scores were significantly higher on the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.
Aoun, Samar M; Ewing, Gail; Grande, Gunn; Toye, Chris; Bear, Natasha
The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Alexander, Dayna S; Alfonso, Moya L; Cao, Chunhua; Wright, Alesha R
Objectives African American maternal caregiver support for prevention of childhood obesity may be a factor in implementing, monitoring, and sustaining children's positive health behaviors. However, little is known about how perceptions of childhood obesity risk factors and health complications influence caregivers' support of childhood obesity prevention strategies. The objective of this study was to determine if childhood obesity risk factors and health complications were associated with maternal caregivers' support for prevention initiatives. Methods A convenience sample of maternal caregivers (N = 129, ages 22-65 years) completed the childhood obesity perceptions (COP) survey. A linear regression was conducted to determine whether perceptions about childhood obesity risk factors and subsequent health complications influenced caregivers' support for prevention strategies. Results Caregivers' perceptions of childhood obesity risk factors were moderate (M = 3.4; SD = 0.64), as were their perceptions of obesity-related health complications (M = 3.3; SD = 0.75); however, they perceived a high level of support for prevention strategies (M = 4.2; SD = 0.74). In the regression model, only health complications were significantly associated with caregiver support (β = 0.348; p Childhood obesity prevention efforts should emphasize health complications by providing education and strategies that promote self-efficacy and outcome expectations among maternal caregivers.
Pasek, Małgorzata; Dębska, Grażyna; Wojtyna, Ewa
Acceptance of illness is a significant determinant of further coping with a disease. Development of illness acceptance may be associated with the sense of coherence and perception of social support. Cancer is an example of a crisis situation, which affects both the patient and his/her close relatives. Consequently, acceptance of illness may be influenced by factors originating from both sides of caregiver-patient dyad. The aim of this study was to analyse direct and indirect interrelationships between perceived support and the sense of coherence in patient-caregiver dyad, and acceptance of illness in cancer patients. Cross-sectional study. The study included 80 dyads composed of cancer patients and their caregivers. Only cancer patients undergoing oncological treatment at the time of the study, for at least 3 months but no longer than 12 months, were enrolled. All subjects completed perceived support subscale included in the Berlin Social Support Scales, sense of coherence-29 questionnaire to determine the sense of coherence and Acceptance of Illness Scale. Compared to cancer patients, their caregivers presented with significantly lower levels of perceived social support and weaker sense of coherence. The sense of coherence in caregivers and patients was determined by their perceived support levels. The sense of coherence in caregivers turned out to be a key resource influencing acceptance of illness in cancer patients, both directly and indirectly, via their perceived social support and their sense of coherence. The sense of coherence, an intrinsic psychological factor determined by social support, is an important determinant of illness acceptance. Functioning of cancer patients is also modulated by psychosocial characteristics of their caregivers. Greater support offered to caregivers may substantially strengthen the sense of coherence in caregivers and cancer patients and, therefore, may improve the functioning of patient-caregiver dyad in a situation of
Oupra, R; Griffiths, R; Pryor, J; Mott, S
In Thailand, the crude death rate from stroke is 10.9/100,000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.
Allicock, Marlyn; Haynes-Maslow, Lindsey; Johnson, La-Shell; Carpenter, William R; Vines, Anissa I; Belle, Denise G; Phillips, Ray; Cherry, Michele W
Racial disparities in breast cancer survivorship are a major concern nationally. How survivors cope with cancer and re-frame their lives is a critical part of survivorship. Community-academic research partnerships may facilitate access to much-needed psychosocial support for African American survivors and caregivers in rural areas, but drivers of successful intervention implementation are not well understood. The purpose of this study was to describe the training and evaluation of Community Coaches and Guides (i.e., peer supporters) using the Peer Connect program for African American breast cancer survivors and caregivers. Community engagement strategies were used to implement the training component of Peer Connect, an evidence-based program grounded in the Diffusion of Innovation Theory utilizing motivational interviewing techniques (MI) and a "train-the-trainer" model. Quantitative and qualitative methods examined implementation outcomes of feasibility, MI fidelity, and acceptability-precursor outcomes that must be achieved before examining intervention impact vis-à-vis changes in support care. Training was feasible to implement and replicable by the trained Community Coaches. Beyond feasibility and replicability, success was modest regarding MI fidelity. Benefits (e.g., serving as role models and having safe sources of support) and lessons learned (e.g., need for additional quality control) were identified as both facilitators and barriers to implementation and as factors that could impact the effectiveness of community-engaged programs to improve survivorship outcomes. Peer Connect, like other programs that employ community-engagement strategies, holds promise to meet the psychosocial support needs of diverse rural cancer survivor populations.
Danucalov, M A D; Kozasa, E H; Ribas, K T; Galduróz, J C F; Garcia, M C; Verreschi, I T N; Oliveira, K C; Romani de Oliveira, L; Leite, J R
Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. The aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program-YCMP group) (n = 25) or an untreated group for the same period of time (control group) (n = 21). The levels of stress, anxiety, depression, and morning salivary cortisol of the participants were measured before and after intervention. The groups were initially homogeneous; however, after intervention, the groups diverged significantly. The YCMP group exhibited a reduction of the stress (P anxiety (P meditation program may offer an effective intervention for reducing perceived stress, anxiety, depression, and salivary cortisol in familial caregivers.
Pahlavanzadeh, Saeid; Dalvi-Isfahani, Fariba; Alimohammadi, Nasrollah; Chitsaz, Ahmad
Lack of adequate training and support of primary caregivers of multiple sclerosis (MS) patients is the major factor in causing stress, anxiety, and increase of burden. Therefore, the treatment team members such as psychiatric nurses can help these vulnerable people overcome psychiatric pressures effectively not only through their care and referral role but also through their supportive characteristic, which helps the patients improve their clinical status, together with their social, familial, and work adaptation. Therefore, the researcher tried to identify the effect of a group psycho-education program on the burden family caregivers with MS patients. This is a two-group three-stage clinical trial. The researcher referred to the heads of neurology clinics to present the purpose of the study and to start the sampling. The neurology clinics of AL Zahra University Hospital, and also a Private Neurology Clinic were selected to collect the data of the study. The subjects were randomly selected, and then, assigned to two groups of study and control. Independent t-test showed a significant reduction in family caregivers' burden immediately after and 1-month after intervention in the study group, compared to control. Repeated measure ANOVA showed a significant reduction in caregivers' burden mean score in the study group (P family caregivers' burden, it is recommended to develop and design other programs for the family caregivers of the patients with MS.
Anderson, Joel G; Hundt, Elizabeth; Dean, Morgan; Keim-Malpass, Jessica; Lopez, Ruth Palan
Many individuals, including dementia caregivers, use blogs to share their experiences. These blogs contain rich narratives representing an untapped resource for understanding the psychosocial impact of caring for a person with dementia at the family level. The present study used blogs written by caregivers of persons with dementia to explore how these individuals leveraged this medium as part of the caregiving experience. Blogs written by self-identified informal caregivers of persons with dementia were identified using a systematic search method, and data were analyzed using a qualitative thematic analysis. Four themes emerged from the narratives: social support through communication and engagement, information gathering and seeking, reminiscing and legacy building, and altruism. By understanding the ways in which individuals providing care for persons with dementia use social media as part of the caregiving experience, family nurses can develop interventions and services aimed at improving caregiver burden and quality of life.
Gorgon, Edward James R
Caregiver-provided physical therapy home programs (PTHP) play an important role in enhancing motor outcomes in pediatric patient populations. This scoping review systematically mapped clinical trials of caregiver-provided PTHP that were aimed at enhancing motor outcomes in children who have or who are at risk for motor delay, with the purpose of (1) describing trial characteristics; (2) assessing methodologic quality, and (3) examining the reporting of caregiver-related components. Physiotherapy Evidence Database (PEDro), Cochrane CENTRAL, PubMed, Scopus, ScienceDirect, ProQuest Central, CINAHL, LILACS, and OTseeker were searched up to July 31, 2017. Two reviewers independently assessed study eligibility. Randomized or quasi-randomized controlled trials on PTHP administered by parents, other family members, friends, or informal caregivers to children who had or who were at risk for motor delay were included. Two reviewers independently appraised trial quality on the PEDro scale and extracted data. Twenty-four articles representing 17 individual trials were identified. Populations and interventions investigated were heterogeneous. Most of the trials had important research design limitations and methodological issues that could limit usefulness in ascertaining the effectiveness of caregiver-provided PTHP. Few (4 of 17) trials indicated involvement of caregivers in the PTHP planning, assessed how the caregivers learned from the training or instructions provided, or carried out both. Included studies were heterogeneous, and unpublished data were excluded. Although caregiver-provided PTHP are important in addressing motor outcomes in this population, there is a lack of evidence at the level of clinical trials to guide practice. More research is urgently needed to determine the effectiveness of caregiver-provided PTHP. Future studies should address the many important issues identified in this scoping review to improve the usefulness of the trial results.
Aoun, Samar M; Deas, Kathleen; Kristjanson, Linda J; Kissane, David W
Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6-8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as "knowing what to expect in the future," "knowing who to contact if concerned," and "equipment to help care." The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people
Sun, Fei; Roff, Lucinda Lee; Klemmack, David; Burgio, Louis D
Objective. This study explored how male and female family caregivers of Alzheimer's disease (AD) patients differ in their use of formal services and informal support and how religiousness may affect such differences. Methods. Data were from a sample of 720 family caregivers of AD patients who participated in the Resources for Enhancing Alzheimer's Caregiver Heath (REACH I) study sites in Birmingham, Boston, Memphis, and Philadelphia. Results. Female caregivers were less likely to use in-home services than males (M = 0.83 vs. M = 1.06, p < .01) but reported more use of transportation services (21.6% vs. 12.7%, p < .01) and more use of informal support (M = 13.9 vs. M = 10.7, p < .01). Mediation tests suggested that three measures of religiousness helped explain the relationship between gender and use of formal services and informal support. Discussion. These findings highlight the necessity to assess AD caregivers' religiousness to better understand their circumstances.
Piil, K; Juhler, M; Jakobsen, J
training improves functional outcome and massage therapy reduces stress. Patients and caregivers found that telephone follow-up and a specialist nurse function was an effective and useful way to achieve information and support. Finally, psycho-education increased feelings of mastery among caregivers...
Reich, John W; Olmsted, Maureen E; van Puymbroeck, Christina M
Fibromyalgia syndrome (FMS) is characterized by uncertainty in diagnosis, treatment, and outcome. This study assessed the role of uncertainty of illness in relationship satisfaction in patients with FMS and osteoarthritis (OA). A total of 51 patients with FMS responded to self-report instruments assessing their uncertainty about their illness, functional ability, average pain, and relationship satisfaction. Their partners independently reported on their sense of caregiver burden and their supportiveness toward the patients. Thirty-two patients with OA and their partners served as a control group. Patients' functional ability and pain were related to partner caregiver burden. Partner caregiver burden was related to lower levels of partner supportiveness for the FMS dyads, but not for the OA dyads. Relationship satisfaction of patients with FMS was related to their higher levels of uncertainty of illness in interaction with their functional disability and pain and their partners' supportiveness. Under high levels of uncertainty of illness, low levels of partner supportiveness were related to lower patient relationship satisfaction, whereas low levels of uncertainty of illness were significant interacting variables in the OA sample. The results suggest that uncertainty of illness is a prominent feature affecting patients with FMS in their relationships with their partners. Suggestions for additional research to explore the role of uncertainty of illness in social relationships are presented, and the therapeutic implications for patient/partner relationships are explored.
Elangovan Aravind Raj
Full Text Available Background/Objectives: Caregivers of persons with schizophrenia experience more stress due to the nature of the symptoms as well as the prolonged duration of illness. The current study is an attempt to understand the subjective components of burden, distress, and social support in caregivers of patients with schizophrenia in Indian context and its linkage with their sociodemographic profile and patient′s illness profile. Methodology: Thirty-two caregivers of patients with schizophrenia from a psychiatric inpatient facility of a multidisciplinary hospital were studied using descriptive research design. Results: The result shows that negative symptoms of patients, subdomains of burden (burden on well-being, marital burden, burden on relations, and burden due to perceived severity were the predictors of subjective burden. Burden on well-being and respondent′s age were predictors of psychological distress. Conclusion: Inclusive treatment services would enhance the quality of life of the caregivers and would help them in ensuring long-term care for the patients with schizophrenia.
Kuo, Li-Min; Huang, Huei-Ling; Liang, Jersey; Kwok, Yam-Ting; Hsu, Wen-Chuin; Liu, Chin-Yi; Shyu, Yea-Ing L
To determine distinct courses of change in health-related quality of life (HRQoL) among family caregivers of individuals with dementia and how participating in a home-based caregiver-training program affects the probability of belonging to each course. Sixty three caregivers were in the intervention group, and 66 caregivers were in the control group of a single-blinded randomized clinical trial. Two distinct trajectories of HRQoL were identified: a well-functioning trajectory and a poor-functioning trajectory. Caregivers who received the training program were more likely than those who did not have a well-functioning trajectory of HRQoL over 18 months. This trajectory included bodily pain (b = 1.02, odds ratio [OR] = 2.76), general health perception (b = 1.28, OR = 3.60), social functioning (b = 1.12, OR = 3.05), vitality (b = 1.51, OR = 4.49), general mental health (b = 1.08, OR = 2.94), and mental component summary (b = 1.27, OR = 3.55). Home-based caregiver training can be considered as part of the protocol for managing patients with dementia and their caregivers. NCT02667951. Copyright © 2016 Elsevier Inc. All rights reserved.
Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard
the future through virtual configurations of group meetings Conclusion: Peer support is meaningful and beneficial for informal caregivers. The support groups provide a source for obtaining positive emotional support, venting negative feeling and gaining help to deal with the everyday life of caring for older...... improvements in feelings of stress and burden. It is unclear how support groups can produce a meaningful outcome for the informal caregivers. Aim: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. Method...... based on similarity in meaning. These categories were subjected to a meta-synthesis that produced a comprehensive set of synthesized findings. Result: The meta-synthesis produced three synthesized findings: 1. Emotional benefits of peer-based support, 2. Facing the challenges of caregiving, 3. Embracing...
Kundu, Anjana; Dolan-Oves, Rebecca; Dimmers, Martha A; Towle, Cara B; Doorenbos, Ardith Z
To explore the feasibility of a Reiki therapy-training program for the caregivers of pediatric medical or oncology inpatients, at a large pediatric hospital, a series of Reiki training classes were offered by a Reiki Master. At completion of the training, an interview was conducted to elicit participant's feedback regarding the effectiveness and feasibility of the training program. Seventeen of the 18 families agreed to participate. Most families (65%) attended three Reiki training sessions, reporting that Reiki benefitted their child by improving their comfort (76%), providing relaxation (88%), and pain relief (41%). All caregivers identified becoming an active participant in their child's care as a major gain from participation in the Reiki training. A hospital-based Reiki training program for caregivers of hospitalized pediatric patients is feasible and can positively impact patients and their families. More rigorous research regarding the benefits of Reiki in the pediatric population is needed. Copyright © 2012 Elsevier Ltd. All rights reserved.
Sørensen, Lisbeth V; Waldorff, Frans B; Waldemar, Gunhild
OBJECTIVES: The aim of this qualitative study was to identify and analyse the participants' experienced outcome of an intensive structured psychosocial intervention programme with tailored counselling, education and support groups for home-living patients with mild Alzheimer's disease...... with the challenges their partner's disease involved, and they were able to face everyday life and social relations with more serenity and competence. After the intervention, both patients and caregivers sought suitable support groups they could join as a permanent activity and caregivers sought permanent counselling....... CONCLUSION: Early tailored counselling and support may improve patients' and caregivers' opportunities to adapt to the challenges of Alzheimer's disease and to maintain well-being....
Casale, Marisa; Wild, Lauren; Cluver, Lucie; Kuo, Caroline
Caring for children can be a source of joy and fulfilment, but also a source of stress, especially for caregivers living with illness and/or coping with difficult socio-economic conditions. Risks for poor caregiver mental health are especially salient in many parts of southern Africa affected by a generalised HIV epidemic, high rates of physical illness, difficult livelihood conditions and an increasing number of orphaned and vulnerable children in need of care. Given limited availability and low uptake of formal mental health services in South Africa, the potential protective role of informal community or ‘social’ resources for caregiver populations requires greater attention. To our knowledge, this is the first study to quantitatively assess the relationship between social support and symptomatic anxiety among caregivers of children living in HIV-endemic southern African communities. The data are from household survey interviews with 2477 adult primary caregivers of children aged 10-17 years living in two (urban and rural) resource-deprived HIV-endemic South African communities. Hierarchical logistic regression analysis with interaction terms was conducted to assess whether HIV and other illness were significant stressors for caregiver anxiety, whether social support had main or stress-buffering protective effects on anxiety, and whether gender moderated the association between social support and anxiety. Our findings showed significant main effects of social support on caregiver anxiety, but no evidence of stress-buffering effects of support or of gender moderating the support-anxiety relationship. This suggests that social support is a general mental health resource for both male and female caregivers of children in these HIV-endemic communities, regardless of whether they are facing specific stressors related to HIV or other illness. Our results highlight the importance of paying greater attention to the social environment when designing and implementing
Stewart, Miriam; Evans, Joshua; Letourneau, Nicole; Masuda, Jeffrey; Almond, Amanda; Edey, Jocelyn
Burdens of poverty are often compounded by respiratory problems. This study aimed to identify the support needs and intervention preferences for low-income families facing this challenge. Interviews were conducted in two Canadian provinces with low-income children/adolescents (n=32) diagnosed with respiratory health problems and their parents or family caregiver (n=37). These vulnerable children and parents described non-supportive interactions with some health service providers and inadequate information. They reported isolation and support deficits, exacerbated by limited resources and health restrictions. Children/adolescents felt isolated and excluded and wanted to connect with peers. Group or dyadic level support, delivered by peers and health professionals, was desired. The importance of logistics to enhance accessibility and appeal of group or dyadic support interventions was clearly identified. The findings of this study reveal that low-income children and their families encounter challenges to accessing support and to utilizing support resources. Partnerships with low-income children/adolescents and family caregivers in provision of education and social support can combat isolation and ignorance. Reducing inequities for this high risk population could be achieved by providing support from experienced peers, in combination with health professional guidance, and knowledge about pulmonary health. Copyright © 2016. Published by Elsevier Inc.
Park, Bu Kyung; Lee, Eunjoo
Objectives The purposes of this study were to develop a Web-based education program, My Child's Safety, which includes patient safety education and information on the diagnosis, treatment, and management for caregivers of children with cancer, and to examine the efficacy of the My Child's Safety program in promoting the caregivers' awareness of patient safety. Methods A one-group pre- and post-test design was adopted. The participants were the caregivers of children with cancer and were recru...
Full Text Available Family caregivers of the elderly are growing in number and the care they are called upon to deliver in industrialized countries is becoming increasingly demanding and complex. Empirical research shows that the caregiving situation can have a significant impact on the health of these caregivers often on account of stress, physical and psychological exhaustion, and a sense of being overwhelmed. In this context, the quality of life of these caregivers depends in large part on professional educational and support interventions. The purpose of this paper is to present three innovative psychoeducational intervention programs developed and empirically tested by the research team of the Université de Montréal’s (Québec, Canada Chair in Nursing Care for Seniors and Their Families over the past fifteen years. These interventions have been developed together with family caregivers experiencing different stressful situations across their care trajectory. The results of evaluative studies of these programs provide evidence to inform professional clinical practice. Future directions for caregiving research are discussed.
Gitlin, Laura N; Hauck, Walter W; Dennis, Marie P; Winter, Laraine
Few studies evaluate whether short-term intervention effects are maintained over time for families caring for persons with dementia. This article examines whether treatment effects found at 6 months following active treatment were sustained at 12 months for 127 family caregivers who participated in an occupational therapy intervention tested as part of the National Institutes of Health Resources for Enhancing Alzheimer's Caregiver Health (REACH) initiative. A randomized two-group design was implemented with three assessment points: baseline, 6 months, and 12 months. Caregivers were randomly assigned to a usual care control group or intervention that consisted of six occupational therapy sessions to help families modify the environment to support daily function of the person with dementia and reduce caregiver burden. Following 6-month active treatment, a maintenance phase consisted of one home and three brief telephone sessions to reinforce strategy use and obtain closure. Non-inferiority statistical analysis was used to evaluate whether intervention caregivers maintained treatment benefits from 6 to 12 months in comparison to controls. For the sample of 127 at 6 months, caregivers in intervention reported improved skills (p = .028), less need for help providing assistance (p = .043), and fewer behavioral occurrences (p = .019) compared to caregivers in control. At 12 months, caregiver affect improved (p = .033), and there was a trend for maintenance of skills and reduced behavioral occurrences, but not for other outcome measures. An in-home skills training program helps sustain caregiver affect for those enrolled for more than 1 year. More frequent professional contact and ongoing skills training may be necessary to maintain other clinically important outcomes such as reduced upset with behaviors.
Casale, Marisa; Cluver, Lucie; Crankshaw, Tamaryn; Kuo, Caroline; Lachman, Jamie M.; Wild, Lauren G.
Caregiver social support has been shown to be protective for caregiver mental health, parenting and child psychosocial outcomes. This is the first known analysis to quantitatively investigate the relationship between caregiver social support and adolescent psychosocial outcomes in HIV-endemic, resource-scarce Southern African communities. A cross-sectional household survey was conducted over 2009-2010 with 2477 South African adolescents aged 10-17 and their adult caregivers (18 years or older) in one urban and one rural community in South Africa’s KwaZulu-Natal province. Adolescent adjustment was assessed using adult caregiver reports of the Strengths and Difficulties questionnaire (SDQ), which measures peer problems, hyperactivity, conduct problems, emotional symptoms and child prosocial behavior. Hierarchical linear regressions and multiple mediation analyses, using bootstrapping procedures, were conducted to assess for: a) direct effects of more caregiver social support on better adolescent psychosocial wellbeing; and b) indirect effects mediated by better parenting and caregiver mental health. Direct associations (psocial support components within parenting interventions but also point to scope for positive intervention on adolescent psychosocial wellbeing through the broader family social network. PMID:25623784
Piraino, Emily; Byrne, Kerry; Heckman, George A; Stolee, Paul
It is becoming increasingly important to find ways for caregivers and service providers to collaborate. This study explored the potential for improving care and social support through shared online network use by family caregivers and service providers in home care. This qualitative study was guided by Rogers' Theory of Diffusion of Innovations [NY: Free Press; 1995], and involved focus group and individual interviews of service providers (n = 31) and family caregivers (n = 4). Interview transcriptions were analyzed using descriptive, topic, and analytic coding, followed by thematic analysis. The network was identified as presenting an opportunity to fill communication gaps presented by other modes of communication and further enhance engagement with families. Barriers included time limitations and policy-related restrictions, privacy, security, and information ownership. Online networks may help address longstanding home-care issues around communication and information-sharing. The success of online networks in home care requires support from care partners. Future research should pilot the use of online networks in home care using barrier and facilitator considerations from this study.
Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard
Introduction: Support groups are considered an effective and economical way to relieve informal caregivers stress and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but there are no significant improvements in feelings of stress...... and burden. It is unclear how support groups can produce a meaningful and optimal outcome for the informal caregivers. Aim: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. Method: A systematic literature review...... Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). Qualitative research data were extracted and the findings were pooled, which involved the aggregation of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according...
Betancourt, Theresa S; Yudron, Monica; Wheaton, Wendy; Smith-Fawzi, Mary C
To examine the role of caregiver mental health and risk and protective factors in influencing levels of internalizing and externalizing emotional and behavioral symptoms over time among a sample of refugee adolescents. Prospective study of 153 Kunama refugee adolescents receiving an emergency education intervention while living in a camp in Ethiopia. Surveys were collected in 2001 (T1) and 2002 (T2). Adolescent and caregiver mental health were assessed using a Kunamenga adaptation of the Youth Self Report; caregiver mental health was assessed using the Hopkins Symptom Checklist-25. Attitudes toward education, satisfaction with education programming, socioeconomic status, and perceptions of access to services were also explored as variables potentially influencing adolescent mental health at follow-up. Caregiver distress was significantly associated with youth externalizing behavior symptoms (β = 8.34, p education intervention had a lower internalizing score (β = -6.34, p refugee displacement. Results suggest that programs targeting mental health in refugee children should consider children within the larger family system, including caregiver influence on child and adolescent mental health adjustment over time. Copyright © 2012 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.
Ducharme, Francine; Lachance, Lise; Lévesque, Louise; Zarit, Steven Howard; Kergoat, Marie-Jeanne
Booster sessions as a means of maintaining the benefits of psycho-educational programs have received little attention in caregiving research. Caregivers were offered a booster session following participation in a program entitled Learning to Become a Family Caregiver (LBFC) intended to facilitate transition to the caregiver role after diagnostic disclosure of dementia in a relative. The 90-minute booster session served to review program content and afforded the opportunity to discuss and practice learned skills. This study sought to test the efficacy of the booster session in maintaining or recovering program effects at six months post-program. Participants in the program were randomly assigned to a group that received the booster session (n = 31) or a group that did not (n = 29). A third control group was also formed, which continued to receive only the usual care provided in memory clinics. Eligible participants - French-speaking primary caregivers of a relative diagnosed with Alzheimer's in the past nine months - were recruited in memory clinics in Quebec (Canada). Participants were blindly assessed before randomization and six months after the booster session on outcomes associated with a healthy role transition. Prediction analyses revealed one significant positive effect of the booster session: emergence of preparedness to provide care. Moreover, with or without the booster session, the program continued to have a positive effect on psychological distress and contributed to the emergence of self-efficacy in dealing with caregiving situations. The booster session had no significant effect on knowledge of services, planning for future care needs, use of reframing as a coping strategy, perceived informal support, and family conflicts. The limited effect observed is discussed in terms of the booster session's content and intensity. Recommendations are made for designing future research on the effect of booster sessions, including the importance of including a
Chi, Nai-Ching; Demiris, George; Lewis, Frances M; Walker, Amy J; Langer, Shelby L
The demand for family caregivers steadily increases as the number of people receiving hospice and palliative care rises. Family caregivers play a significant role in supporting their loved ones in end-of-life care. However, there is limited evidence about the effectiveness of the interventions for supporting family caregivers. This article synthesizes behavioral and educational interventions that support family caregivers in end-of-life care. A systematic review was conducted and searched interventional studies published between 2004 and 2014 in PubMed, CINAHL, Embase, and The Cochrane Library electronic databases. Fourteen studies were identified and analyzed: 4 educational studies, 6 cognitive behavioral therapy studies, and 4 psychoeducational studies. All educational and behavioral interventions had developed structures and treatment manuals and improved family caregivers' outcomes. The cognitive behavioral therapy resulted in more positive outcomes than the other 2 interventions. More rigorous randomized controlled trials are needed to replicate current effective interventions with larger and diverse sample. Future studies need to develop tools for assessing family caregivers' needs, create consistent and specific tools to effectively measure family caregivers' outcomes, incorporate a cost-effectiveness analysis, and find the most efficient intervention format and method. © The Author(s) 2015.
Full Text Available Abstract Background Brief family intervention may have a positive impact on family caregivers for patients with mental disorders. We assessed the effectiveness of a group psycho-educational program on family caregivers for patients with schizophrenia and mood disorders. Methods This randomized controlled trial was performed on 100 caregivers for patients with mental disorders attending the Isfahan Behavioral Sciences Research Center (IBSRC, in Isfahan, Iran. One hundred family caregivers of patients with schizophrenia (n = 50 and mood disorders (n = 50 were selected and assigned randomly to either a psycho-educational group intervention or routine care in each diagnosis category. The caregivers were followed for 3 months. Caregiver burden was assessed using the Zarit Burden Interview Results The mean scores of the Zarit caregiver burden decreased significantly for the group that participated in the psycho-educational program, while scores in the control group did not change significantly. Conclusions This group intervention program was effective to reduce the caregiver burden for both categories of mental disorders in the Iranian population. This group intervention program may improve the quality of life of patients and caregivers by improving the standards of care giving. Trial registration RCT registration number: IRCT138804272200N
Czaja, Sara J; Loewenstein, David; Schulz, Richard; Nair, Sankaran N; Perdomo, Dolores
Available services and intervention programs for dementia caregivers are often underutilized because of issues such as cost, logistics, lack of knowledge about available services, or insufficient support from others. Information technologies offer the potential of removing these barriers and facilitating the ability of caregivers to access needed support. This project evaluated the feasibility and efficacy of technology-based psychosocial intervention among minority family caregivers of dementia patients. A feasibility and efficacy trial. Participants' homes in the Greater Miami Community. One hundred ten (56 Hispanic American and 54 African American) caregivers of patients with dementia. A technology-based multi-component psychosocial intervention was delivered in-home and via videophone technology over 5 months. The intervention was modeled after the REACH II intervention and targeted known areas of caregiver risk. Standardized measures of depression, caregiver burden, social support, and the caregivers' perception of the caregiver's experience were administered at baseline and 5 months post-randomization. Overall, caregivers who received the intervention reported a decrease in burden, an increase in perceived social support and positive perceptions of the caregiving experience. No effect was observed for depression. Most participants indicated that the intervention improved their caregiving skills and found the technology to be easy to use. A technology-based format was feasible for delivering a multi-component intervention to minority family dementia caregivers. The intervention improved caregiver outcomes for both Hispanic and African American caregivers. The results suggest that technology may help eliminate disparities in access to caregiver intervention programs. Copyright © 2013 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.
Bolen, Rebecca M; Gergely, Kellie B
Postdisclosure caregiver support has long been considered a key factor in the functioning of children after their disclosure of sexual abuse, and numerous studies and reviews support this relationship. Yet, a closer look at this literature suggests that support for this relationship might not be as strong or consistent as reported. The purpose of this article is to review studies assessing the relationship between caregiver support of sexually abused children and postdisclosure functioning of their children. Studies were collected using various search engines, and the tables of contents of certain child maltreatment journals were reviewed. To be included, studies had to be published prior to 2012 and to quantitatively capture the bivariate relationship between a quantified assessment of nonoffending caregiver (NOC) support anytime after the child's sexual abuse disclosure and a quantified assessment of at least 1 of the 11 types of postdisclosure functioning in the children. Twenty-nine studies met the criteria to be included. In the meta-analysis, Pearson's Product Moment Correlation, transformed to a Fisher's Z, was used as the effect size. Potential moderators of effect size were also coded and assessed. Postdisclosure caregiver support was significantly related to 3 of the 11 different types of postdisclosure functioning in children. However, the largest effect size was .170, and 8 of the 11 types of postdisclosure functioning in children had effect sizes smaller than ±.100. Few moderators of the relationship between NOC support and postdisclosure functioning in children were found. Minimal support for the relationship between caregiver support of sexually abused children and children's postdisclosure functioning was found. At this time, it is impossible to determine whether this weak relationship can be attributed to the many methodological weaknesses in the measurement of caregiver support or whether caregiver support is not related to postdisclosure
Maclean, Barbara; Levkoff, Sue; Sharman, Paul
Panel 5 – Technologies in Support of Caregivers Chair: Barbara MacLean, Executive Director, BC Family Caregivers’ Network Sue Levkoff, Director, SmartSTATE© SeniorSMART© Center of Economic Excellence, University of South Carolina - “A Self-directed, On-line Training Program for Latino and Chinese Family Dementia Caregivers” Paul Sharman, Co-founder, Claris Healthcare - “The Claris Companion, a Communication and Monitoring System for Caregivers and Seniors Living on Their Own”...
Aoun, Samar; Toye, Chris; Deas, Kathleen; Howting, Denise; Ewing, Gail; Grande, Gunn; Stajduhar, Kelli
Systematic assessment of family caregivers' support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers' outcomes and their capacity to provide care at end of life. To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool. This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken. The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner. Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes. © The Author(s) 2015.
Gelman, Caroline; Black, Kathy; Kaye, Lenard W
The number of Americans aged 65 and older is projected to increase from 35 million to 88.5 million in the first half of the 21st century. However, there is a serious gap between the number of health care and social service practitioners needed to work with the aging and the number available and trained to do so. The authors review current research on what works in engaging students in geriatric and gerontological work. The authors then present three projects from the Weinberg Caregiver Initiative as illustrations of innovative caregiver programming building on community-based partnerships which successfully incorporate aspects of best practices in gerontological education to increase student interest in work with the aging populations, while serving older adults and their caregivers.
Full Text Available Background: The caregivers of persons with epilepsy and schizophrenia undergo severe emotional, physical, financial burden due to the nature, chronicity, disability, and stigma attached to the illness. Aim: To assess the burden and social support among caregivers of persons with schizophrenia and epilepsy. Method: The study was conducted at the Out Patient Department of LokopriyaGopinathBordoloi Regional Institute of Mental Health, Tezpur. It was a comparative study. Purposive sampling technique was used for selection of the sample. The sample for the current study comprised of caregivers of 30 persons with schizophrenia and 30 persons suffering from epilepsy. A semi-structured socio-demographic data sheet, the Burden Assessment Schedule (BAS, the Social Support Questionnaire, and the General Health Questionnaire were administered to the caregivers. Results: There was no significant difference reported by the caregivers in the two groups with the entire domains of BAS and perceived social support. Physical and mental health, and caregivers’ strategy domains of BAS had significant negative correlation at 0.05 levels with perceived social support. External support, support of patient, taking responsibility, and other relation domains of BAS had significant negative correlation at the 0.01 level with perceived social support. Conclusion: While the two groups had no significant difference with the entire domains of BAS and perceived social support; physical and mental health, and caregivers’ strategy had significant negative correlation with perceived social support.
Keeffe, R. [Atomic Energy Control Board, Canadian Safeguards Support Program, Ottawa, Ontario (Canada)
Canada supports international safeguards as a means by which the proliferation of nuclear weapons can be discouraged. Canada recognizes that,to meet that the IAEA must have effective safeguards techniques and the active cooperation of Member States. Therefore the Canadian Government decided in 1976 to initiate a program in support of IAEA safeguards, known as the Canadian Safeguards Support Program (CSSP). The CSSP is funded and administered by the Atomic Energy Control Board (AECB). The CSSP is a co-ordinated program for the development and the application of safeguards instruments and techniques for nuclear facilities and materials on behalf of the IAEA and also in support of Canada's own national nuclear material safeguards system, implemented by the AECB. (author)
Full Text Available There is a consensus that cancer care should go beyond physical care as cancer patients and their family caregivers experience psychological burden, financial difficulty, as well as social relation issues. The current study aimed to investigate the moderating impact of social support on depression and anxiety of cancer patients and their family caregivers.Gastric cancer patients and their family caregivers who visited a university medical center in Seoul were approached for participation in the study. Fifty-two pairs of adult patients and caregivers participated in the study. Along with demographic information and the physical condition of the patients, such as pre-operation cancer stage and the type of gastrectomy, social support, depression, and anxiety were measured for patients and caregivers, respectively.In the first round of analysis, patients' depression was associated with age, while patients' anxiety was related to income. On the other hand, caregivers' depression was not associated with patients' health and living arrangement. In the second round of analysis to examine the moderating effect of social support, patients' income and social support were related to depression and anxiety, but the interaction of income and social support was only observed for anxiety. For caregivers, no interaction effects were found. Social support decreased the negative effects of low income status on the patients.While the income of the families with cancer cannot be adjusted in the short-term, their experience of social support can be managed by a proper support system. Diverse implications in medical settings are discussed.
Currow David C
Full Text Available Abstract Background End-stage lung disease (ESLD is a frequent cause of death. What are the differences in the supports needed by caregivers of individuals with ESLD at end of life versus other life-limiting diagnoses? Methods The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey. In 2002, 2003 and 2005-2007, respondents were asked a range of questions about end-of-life care; there were approximately 3000 survey participants annually (participation rate 77.9%. Responses were standardised for the whole population. The families and friends who cared for someone with ESLD were the focus of this analysis. In addition to describing caring, respondents reported additional support that would have been helpful. Results Of 1504 deaths reported, 145 (9.6% were due to ESLD. The ESLD cohort were older than those with other 'expected' causes of death (> 65 years of age; 92.6% versus 70.6%; p physical care, information provision, and emotional and spiritual support. Conclusions Caregiver needs were similar regardless of the underlying diagnosis although access to palliative care specialist services occurred less often for ESLD patients. This was despite significantly longer periods of time for which care was provided.
Lauritzen, Jette; Bjerrum, Merete; Sørensen, Erik Elgaard
the future through virtual configurations of group meetings Conclusion: Peer support is meaningful and beneficial for informal caregivers. The support groups provide a source for obtaining positive emotional support, venting negative feeling and gaining help to deal with the everyday life of caring for older......Background: Support groups are considered an effective way to care for informal caregivers of older adults with dementia and relieve their feelings of stress and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but with no significant......: A systematic literature review was conducted based on a peer-reviewed and published review protocol. 233 full-text papers were assessed for eligibility. Five qualitative papers were selected and assessed for methodological quality prior to inclusion using The Joanna Briggs Institute Qualitative Assessment...
Balfe, M; Keohane, K; O'Brien, K; Sharp, L
Head and neck cancer is a serious form of cancer that can generate substantial physical and psychosocial morbidity. Informal caregivers can help patients to manage head and neck cancer and its emotional impacts, both during and after treatment. Caregivers, however, can experience considerable stress as a result of their caring activities. Supportive relationships can protect caregivers from psychosocial strain. Thirty-one head and neck cancer caregivers were interviewed about their experiences of accessing social support from their social networks; difficulties that they experienced accessing this support; and strategies that they used to address these difficulties. Results suggest that head and neck cancer caregivers strongly value social support, but can find it difficult to obtain, and a number of them experience socially negative responses from their networks. Some carers attempt to answer or supplement support deficiencies by turning to non-human coping supports, such as pets, spiritual figures or medication. Implications for theory and practice are discussed. © 2016 John Wiley & Sons Ltd.
Oh, Juyeon; Kim, Jung A
To identify the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature. Little is known about the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed. Scoping review. We conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000-July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer-reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis/motor neuron disease or their caregivers. Thirty-seven articles were included. Our review shows that amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers' supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (n = 24), followed by Informational needs (n = 19), Social needs (n = 18), Psychological needs (n = 16), Physical needs (n = 15), Emotional needs (n = 13) and Spiritual needs (n = 8). From the perspectives of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support. The Supportive Care Needs Framework has potential utility in the development of patient-centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals
... Coping with Alzheimer’s COPD Caregiving Take Care! Caregiver Statistics Statistics on Family Caregivers and Family Caregiving Caregiving Population ... Health Care Caregiver Self-Awareness State by State Statistics Caregiving Population The value of the services family ...
Bezruczko, N.; Stanley, T.; Battle, M.; Latty, C.
Despite broad sweeping pronouncements by international research organizations that social sciences are being integrated into global research programs, little attention has been directed toward obstacles blocking productive collaborations. In particular, social sciences routinely implement nonlinear, ordinal measures, which fundamentally inhibit integration with overarching scientific paradigms. The widely promoted general linear model in contemporary social science methods is largely based on untransformed scores and ratings, which are neither objective nor linear. This issue has historically separated physical and social sciences, which this report now asserts is unnecessary. In this research, nonlinear, subjective caregiver ratings of confidence to care for children supported by complex, medical technologies were transformed to an objective scale defined by logits (N=70). Transparent linear units from this transformation provided foundational insights into measurement properties of a social- humanistic caregiving construct, which clarified physical and social caregiver implications. Parameterized items and ratings were also subjected to multivariate hierarchical analysis, then decomposed to demonstrate theoretical coherence (R2 >.50), which provided further support for convergence of mathematical parameterization, physical expectations, and a social-humanistic construct. These results present substantial support for improving integration of social sciences with contemporary scientific research programs by emphasizing construction of common variables with objective, linear units.
Ana Karina Monte Cunha Marques
Full Text Available Estudo qualitativo, do tipo descritivo, objetivando conhecer a experiência de cuidar de pessoas doentes no contexto dos lares, analisando as implicações do apoio social na saúde física e emocional do familiar cuidador. Os dados foram coletados por meio da entrevista semi-estruturada junto a dezoito familiares cuidadores de pessoas com doenças crônicas. A técnica do discurso do sujeito coletivo foi utilizada para a organização dos dados. Constatou-se que todos os informantes eram do sexo feminino, com idade média de cinquenta anos, possuiam até o nível médio de escolaridade, cuidavam ininterruptamente de pessoa doente, predominando as mães com sequela de acidente vascular cerebral. Relatavam comprometimento da sua saúde relacionado ao cuidado realizado: dor na coluna, hipertensão, enxaqueca e depressão. Os discursos coletivos são sugestivos da quebra das redes sociais e da escassez de apoio, levando a pessoa a rejeitar a condição de cuidador. A sobrecarga ficou caracterizada pelo familiar cuidador perceber-se diante de inúmeras situações de enfrentamento, muitas das quais não conseguia administrar.This is a qualitative and descriptive study aiming to know the experience of taking care of sick people in the context of homes, analyzing the implications of the social support in the physical and emotional health of the family caregiver. The data had been collected by means of the semi-structured interview with 18 family caregivers of people with chronic illnesses. The technique of the Collective subject discourse was used for the organization of the data. One evidenced that all the informers were of the feminine sex, with average age of 50 years and medium instructional level. They took care uninterruptedly of sick people predominating the mothers with sequel of stroke. They reported health complications related to the care carried through: back pain, hypertension, migraine and depression. The collective speeches are
Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard
Background: Support groups are considered an especially effective and economical way to relieve informal caregiver’s stress and burden, although it is unclear if participating in group meetings produces a meaningful outcome for the informal caregiver. Aim: To identify the meaningfulness of partic......Background: Support groups are considered an especially effective and economical way to relieve informal caregiver’s stress and burden, although it is unclear if participating in group meetings produces a meaningful outcome for the informal caregiver. Aim: To identify the meaningfulness...... of participating in support groups for informal caregivers of older adults with dementia living in their own home. Method: A systematic literature review was conducted based on a peer-reviewed and published review protocol. 233 full-text papers were assessed for eligibility. Five qualitative papers met......-QARI. Result: The meta-synthesis produced three synthesized findings: 1. Emotional benefits of peer-based support, 2. Facing the challenges of caregiving, 3. Embracing the future through virtual configurations of group meetings Conclusion: Peer support is meaningful and beneficial for informal caregivers...
Minor, Holly G; Carlson, Linda E; Mackenzie, Michael J; Zernicke, Kristin; Jones, Lanice
Given the demands of caring for chronically ill children, it is not surprising that caregivers often experience high levels of chronic stress. A Mindfulness-Based Stress Reduction (MBSR) program may offer relief to these caregivers by providing tools for self-care and heath promotion that otherwise may be lacking. MBSR classes were offered without restriction to parents of children attending various clinics at a large urban children's medical centre. Caregivers completed the Profile of Mood States (POMS) and Symptoms of Stress Inventory (SOSI) both before and after program participation. Forty-four caregivers participated in one of seven group MBSR sessions that were offered between August 2001 and February 2004. Most were mothers of children with special needs and various chronic conditions, who had been diagnosed an average of 7 years previous. Prior to the intervention, caregivers reported very high levels of stress and mood disturbance. These decreased substantially over the 8-week program, with an overall reduction in stress symptoms of 32% (p MBSR program for caregivers of chronically ill children was successful in significantly decreasing substantial stress symptoms and mood disturbance. Further studies would benefit from using more rigorous methodology and applying the program to other groups of chronically stressed caregivers.
Perrin, Paul B; Panyavin, Ivan; Morlett Paredes, Alejandra; Aguayo, Adriana; Macias, Miguel Angel; Rabago, Brenda; Picot, Sandra J Fulton; Arango-Lasprilla, Juan Carlos
Multiple sclerosis (MS) rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory), health-related quality of life (HRQOL; Short Form-36), and social support (Interpersonal Support Evaluation List-12) in 81 (66.7% women) Mexican MS caregivers. As compared to men caregivers, women had lower mental health (p = 0.006), HRQOL (p social support (p America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America-particularly for women caregivers-should address the influence of gender-role conformity on care and psychosocial functioning.
Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard
in support groups seems to be beneficial for the informal caregivers, but with no significant improvements in feelings of stress and burden. It is unclear how support groups can produce a meaningful outcome for the informal caregivers. Aim: To identify the meaningfulness of participating in support groups...... assembling the findings rated according to their quality, and categorizing these findings based on similarity in meaning. These categories were subjected to a meta-synthesis that produced a comprehensive set of synthesized findings. Result: The meta-synthesis produced three synthesized findings: 1. Emotional...
Cecil, Dawn K.; McHale, James; Strozier, Anne; Pietsch, Joel
Attendant to the exponential increase in rates of incarceration of mothers with young children in the United States, programming has been established to help mothers attend to parenting skills and other family concerns while incarcerated. Unfortunately, most programs overlook the important, ongoing relationship between incarcerated mothers and family members caring for their children—most often, the inmates' own mothers. Research reveals that children's behavior problems escalate when different co-caregivers fail to coordinate parenting efforts and interventions, work in opposition, or disparage or undermine one another. This article presents relevant research on co-caregiving and child adjustment, highlights major knowledge gaps in need of study to better understand incarcerated mothers and their families, and proposes that existing interventions with such mothers can be strengthened through targeting and cultivating functional coparenting alliances in families. PMID:19884977
Reblin, Maija; Otis-Green, Shirley; Ellington, Lee; Clayton, Margaret F
Although there is growing recognition of the importance of integrating spirituality within health care, there is little evidence to guide clinicians in how to best communicate with patients and family about their spiritual or existential concerns. Using an audio-recorded home hospice nurse visit immediately following the death of a patient as a case-study, we identify spiritually-sensitive communication strategies. The nurse incorporates spirituality in her support of the family by 1) creating space to allow for the expression of emotions and spiritual beliefs and 2) encouraging meaning-based coping, including emphasizing the caregivers' strengths and reframing negative experiences. Hospice provides an excellent venue for modeling successful examples of spiritual communication. Health care professionals can learn these techniques to support patients and families in their own holistic practice. All health care professionals benefit from proficiency in spiritual communication skills. Attention to spiritual concerns ultimately improves care. © The Author(s) 2014.
DePasquale, Nicole; Polenick, Courtney A; Davis, Kelly D; Berkman, Lisa F; Cabot, Thomas D
This study examined how women who combine long-term care employment with unpaid, informal caregiving roles for children (double-duty-child caregivers), older adults (double-duty-elder caregivers), and both children and older adults (triple-duty caregivers) differed from their workplace-only caregiving counterparts on workplace factors related to job retention (i.e., job satisfaction and turnover intentions) and performance (i.e., perceived obligation to work while sick and emotional exhaustion). The moderating effects of perceived spouse support were also examined. Regression analyses were conducted on survey data from 546 married, heterosexual women employed in U.S.-based nursing homes. Compared to workplace-only caregivers, double-duty-elder and triple-duty caregivers reported more emotional exhaustion. Double-duty-child caregivers reported lower turnover intentions and both double-and-triple-duty caregivers felt less obligated to work while sick when perceiving greater support from husbands. Results indicate that double-and-triple-duty caregiving women's job retention and obligation to work while sick may depend on perceived spouse support, highlighting the important role husbands play in their wives' professional lives. Findings also lend support to the emerging literature on marriage-to-work positive spillover, and suggest that long-term care organizations should target marital relationships in family-friendly initiatives to retain and engage double-and-triple-duty caregiving employees.
Supporting someone with an eating disorder: a systematic review of caregiver experiences of eating disorder treatment and a qualitative exploration of burnout management within eating disorder services
Aims: Eating disorder recovery is often supported by caregivers and mental health professionals. This research portfolio focuses on the experiences of supporting someone with an eating disorder from the perspective of the caregivers and also mental health professionals. The aims of this research portfolio are: Firstly, to systematically review the published qualitative literature relating to the experiences of caregivers supporting someone during eating disorder treatment; and ...
Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech
Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization. Data were collected from 150 pairs of stroke patients/caregivers. Caregiver burden was assessed on the Caregiver Burden scale (CB). Several characteristics were measured as potential predictors of the burden. Special attention was paid to the caregiver's sense of coherence (SOC) and anxiety. Regression analysis was employed to test the hypothesized relationships between these variables and the burden. Forty-seven percentage of the caregivers reported a substantial burden (severe or moderate). Caregiver SOC (p burden and the most consistent predictors of the majority of aspects included in the CB scale. Caregiver health, patient's gender, time spent caregiving and social support were also factors related to the burden. The identified predictors explained 67% of the variance in the overall burden. Clinicians and other professionals should focus on the coping abilities of caregivers, their emotional state and the level of patients' dependency, as these are the vital and modifiable factors affecting caregiver burden following stroke.
Xu, Ling; Li, Yawen; Min, Joohong; Chi, Iris
Using the stress-coping framework, this study examined whether worry about not having a caregiver in old age was associated with depressive symptoms among widowed Chinese older adults, including the moderating effects of self-perceived family support. Using a sample of 5331 widowed adults aged 60 years old or older from the 2006 National Sample Survey of the Aged Population in Urban/Rural China, we regressed measures of depressive symptoms on worry about not having a caregiver. We also tested moderation effects of family support. Individuals who were worried about not having a caregiver reported significantly higher levels of depressive symptoms. Feeling that their children are filial, having instrumental support from children, and having only daughters moderated the effects of worry about not having a caregiver on depressive symptoms. Our findings indicate the detrimental effects of worry about not having a caregiver on the psychological well-being of widowed older adults. This study also highlights some forms of family support that may help reduce such negative effects of widowhood.
Cláudia Viot de Albuquerque Moura
Full Text Available Objective: To assess the formal and informal support given to the family caregiver of a patient with Spinal Muscular Atrophy I and II. Method: This was a study with a qualitative approach developed in 2008 in the homes of informants and in the premises of the Hospital Infantil Albert Sabin in Fortaleza, Ceara, conducted with 13 mothers, primary caregivers for their ill children. For data collection we used both the interview and the instrument generator of the names and qualifier of the relations, adapted for this study. Quantitative data were processed using the programs UCINET NetDraw 6.123 and 2.38, while the qualitative data were organized based on the technique of the Collective Subject Discourse. The analyses were conducted by means of network maps and collective discourses raised by central ideas. Results: The formal social network of family caregivers was composed of 72 actors, among professionals in the areas of health, education and others, linked to 12 institutions. The informal network was comprised of 83 actors. It was found that the management of care, even when the caregiver has support from other people is a cause of stress and overload. Conclusion: It is evident the importance of applying Social Network Analysis as a tool for understanding structural features and the dynamics of social relations of family caregiver. Of a patient with spinal muscular atrophy. The analysis suggests the need for intervention in the study group as a way to contribute to the recognition and use of existing services, increasing the significance of the help provided by network interactions.
Bakker, T.J.; Duivenvoorden, H.J.; Lee, J. van der; Olde Rikkert, M.G.M.; Beekman, A.T.; Ribbe, M.W.
OBJECTIVE: To test the effectiveness of an integrative psychotherapeutic nursing home program (integrative reactivation and rehabilitation [IRR]) to reduce multiple neuropsychiatry symptoms (MNPS) of cognitively impaired patients and caregiver burden (CB). DESIGN: Randomized controlled trial.
Despite the links between health human resources policy, immigration policy, and education policy, silos persist in the policy-making process that complicate the professional integration of internationally educated nurses in Canada. Drawing on the literature on nurse migration to Canada through the Live-in Caregiver Program, this paper sheds light on the contradictions between immigration and health human resources policy and their effect on the integration of internationally educated nurses in Canada. The analysis reveals a series of paradoxes within and across immigration and health human resources policy that affect the process of professional integration of this group of health professionals into the nursing workforce in Canada. I will further link the discussion to the recently implemented Caregiver Program, which provides a unique pathway for healthcare workers, including nurses, to migrate to Canada. Given recent introduction of the Canadian Caregiver Program, major policy implications include the need to bridge the gap between health human resources policy and immigration policy to ensure the maximum integration of migrant nurses in Canada.
M. A. D. Danucalov
Full Text Available Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. The aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program—YCMP group (n=25 or an untreated group for the same period of time (control group (n=21. The levels of stress, anxiety, depression, and morning salivary cortisol of the participants were measured before and after intervention. The groups were initially homogeneous; however, after intervention, the groups diverged significantly. The YCMP group exhibited a reduction of the stress (P<0.05, anxiety (P<0.000001, and depression (P<0.00001 levels, as well as a reduction in the concentration of salivary cortisol (P<0.05. Our study suggests that an 8-week yoga and compassion meditation program may offer an effective intervention for reducing perceived stress, anxiety, depression, and salivary cortisol in familial caregivers.
Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo
[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.
Aoun, Samar M.; Deas, Kathleen; Howting, Denise; Lee, Gabriel
A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Care Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers’ feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the
Lilly, Meredith B; Robinson, Carole A; Holtzman, Susan; Bottorff, Joan L
After more than a decade of concerted effort by policy-makers in Canada and elsewhere to encourage older adults to age at home, there is recognition that the ageing-in-place movement has had unintended negative consequences for family members who care for seniors. This paper outlines findings of a qualitative descriptive study to investigate the health and wellness and support needs of family caregivers to persons with dementia in the Canadian policy environment. Focus groups were conducted in 2010 with 23 caregivers and the health professionals who support them in three communities in the Southern Interior of British Columbia. Thematic analysis guided by the constant comparison technique revealed two overarching themes: (1) forgotten: abandoned to care alone and indefinitely captures the perceived consequences of caregivers' failed efforts to receive recognition and adequate services to support their care-giving and (2) unrealistic expectations for caregiver self-care relates to the burden of expectations for caregivers to look after themselves. Although understanding about the concepts of caregiver burden and burnout is now quite developed, the broader sociopolitical context giving rise to these negative consequences for caregivers to individuals with dementia has not improved. If anything, the Canadian homecare policy environment has placed caregivers in more desperate circumstances. A fundamental re-orientation towards caregivers and caregiver supports is necessary, beginning with viewing caregivers as a critical health human resource in a system that depends on their contributions in order to function. This re-orientation can create a space for providing caregivers with preventive supports, rather than resorting to costly patient care for caregivers who have reached the point of burnout and care recipients who have been institutionalised. © 2011 Blackwell Publishing Ltd.
Aoun, Samar M; Rumbold, Bruce; Howting, Denise; Bolleter, Amanda; Breen, Lauren J
Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014-15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not. More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4-10%). The support for family caregivers before and after their relative's death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3-6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as "not personal" or "generic", or "just standard practice". Timeliness and consistency of relationship is crucial to building rapport and trust in the service's ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre
Samar M Aoun
Full Text Available Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families.To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines.An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014-15, 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not.More people with cancer (64% had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4-10%. The support for family caregivers before and after their relative's death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3-6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as "not personal" or "generic", or "just standard practice".Timeliness and consistency of relationship is crucial to building rapport and trust in the service's ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre
Rumbold, Bruce; Howting, Denise; Bolleter, Amanda; Breen, Lauren J.
Background Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. Objective To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. Design An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014–15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not. Results More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4–10%). The support for family caregivers before and after their relative’s death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3–6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as “not personal” or “generic”, or “just standard practice”. Conclusions Timeliness and consistency of relationship is crucial to building rapport and trust in the service’s ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in
Khusaifan, Shatha Jamil; El Keshky, Mogeda El Sayed
Caring for someone with Alzheimer's disease (AD) is very challenging. Social support may play a crucial role in helping caregivers to adapt better to their caregiving role. The aim of this study is to explore the role of social support as a moderator variable of the relationship between depression and life satisfaction in caregivers for patients with AD in Saudi Arabia. In this cross-sectional study, 122 caregivers for patients with AD completed questionnaires assessing informal social support, depressive symptoms, and general life satisfaction. The demographic characteristics showed that 79% (n = 96) of caregivers were females and between the ages of 20 and 50. Higher levels of social support positively correlated with reported higher levels of life satisfaction (r = 0.483, p networks may help in coping with caregiving burden and better quality of life.
Stevens, Lillian Flores; Perrin, Paul B; Gulin, Shaina; Rogers, Heather L; Villaseñor Cabrera, Teresita; Jiménez-Maldonado, Miriam; Arango-Lasprilla, Juan Carlos
The aim of this study was to examine the influence of three types of social support (appraisal, belonging, and tangible) on caregiver mental health (anxiety, burden, depression, and satisfaction with life) among Mexican caregivers of individuals with traumatic brain injury. This is a cross-sectional study of 90 family caregivers from Hospital Civil Fray Antonio Alcade in Guadalajara, Mexico. More months spent caregiving was associated with decreases in all three types of social support. Older age and fewer years of education were associated with lower appraisal social support. More hours per week spent caregiving was associated with lower caregiver state anxiety and greater satisfaction with life. Appraisal, belonging, and tangible social support were all significantly correlated with more salubrious caregiver mental health outcomes, except satisfaction with life. Appraisal social support independently predicted lower caregiver depression. Particularly in Latin America, strong social support networks and family connections seem closely tied to key mental health outcomes such as depression. Rehabilitation interventions aimed at strengthening perceptions of social support of caregivers of individuals with traumatic brain injury that specifically target availability of advice may improve mental health and contribute to more optimal informal care for individuals with traumatic brain injury.
Wilks, Scott E.
Objective: Information on the shortened, 20-item version of the Perceived Social Support Scale (S-PSSS) is scarce. The purpose of this study is to evaluate the psychometric properties of the S-PSSS Family (SSfa) and Friends (SSfr) subscales. Method: Because of their common coping method of social support, a cross-sectional sample of Alzheimer's…
Lucas, J E; Richter, L M; Daelmans, B
An estimated 43% of children younger than 5 years of age are at elevated risk of failing to achieve their human potential. In response, the World Health Organization and UNICEF developed Care for Child Development (CCD), based on the science of child development, to improve sensitive and responsive caregiving and promote the psychosocial development of young children. In 2015, the World Health Organization and UNICEF identified sites where CCD has been implemented and sustained. The sites were surveyed, and responses were followed up by phone interviews. Project reports provided information on additional sites, and a review of published studies was undertaken to document the effectiveness of CCD for improving child and family outcomes, as well as its feasibility for implementation in resource-constrained communities. The inventory found that CCD had been integrated into existing services in diverse sectors in 19 countries and 23 sites, including child survival, health, nutrition, infant day care, early education, family and child protection and services for children with disabilities. Published and unpublished evaluations have found that CCD interventions can improve child development, growth and health, as well as responsive caregiving. It has also been reported to reduce maternal depression, a known risk factor for poor pregnancy outcomes and poor child health, growth and development. Although CCD has expanded beyond initial implementation sites, only three countries reported having national policy support for integrating CCD into health or other services. Strong interest exists in many countries to move beyond child survival to protect and support optimal child development. The United Nations Sustainable Development Goals depend on children realizing their potential to build healthy and emotionally, cognitively and socially competent future generations. More studies are needed to guide the integration of the CCD approach under different conditions. Nevertheless
Chiatti, Carlos; Masera, Filippo; Rimland, Joseph M; Cherubini, Antonio; Scarpino, Osvaldo; Spazzafumo, Liana; Lattanzio, Fabrizia
The epidemic of Alzheimer's disease (AD) represents a significant challenge for the health care and social service systems of many developed countries. AD affects both patients and family caregivers, on whom the main burden of care falls, putting them at higher risk of stress, anxiety, mortality and lower quality of life. Evidence remains controversial concerning the effectiveness of providing support to caregivers of AD patients, through case management, counseling, training, technological devices and the integration of existing care services. The main objectives of the UP-TECH project are: 1) to reduce the care burden of family caregivers of AD patients; and 2) to maintain AD patients at home. A total of 450 dyads comprising AD patients and their caregivers in five health districts of the Marche region, Italy, will be randomized into three study arms. Participants in the first study arm will receive comprehensive care and support from a case manager (an ad hoc trained social worker) (UP group). Subjects in the second study arm will be similarly supported by a case manager, but in addition will receive a technological toolkit (UP-TECH group). Participants in the control arm will only receive brochures regarding available services. All subjects will be visited at home by a trained nurse who will assess them using a standardized questionnaire at enrollment (M0), 6 months (M6) and 12 months (M12). Follow-up telephone interviews are scheduled at 24 months (M24). The primary outcomes are: 1) caregiver burden, measured using the Caregiver Burden Inventory (CBI); and 2) the actual number of days spent at home during the study period, defined as the number of days free from institutionalizations, hospitalizations and stays in an observation unit of an emergency room. The UP-TECH project protocol integrates previous evidence on the effectiveness of strategies in dementia care, that is, the use of case management, new technologies, nurse home visits and efforts toward the
Winoground, Iris R.; And Others
Findings from a study of 18 Alzheimer's patients in a day hospital program and their caregivers in family support groups indicated that such therapeutic programs may slow behavior deterioration in patients and promote enhanced coping in caregivers. Other findings suggest an improvement in caregivers' coping. (Author/ABB)
Full Text Available Context and Aim: Yoga has been found to be effective in the management of stress. This paper describes the development of a yoga program aimed to reduce burden and improve coping of family caregivers of inpatients with schizophrenia in India. Materials and Methods: Based on the assessment of caregiver needs, literature review, and expert opinion, a ten-day group yoga program was initially developed using the qualitative inductive method of inquiry. Each day′s program included warm-up exercises, yogic asanas, pranayama, and satsang. A structured questionnaire eliciting comments on each day′s contents was given independently to ten experienced yoga professionals working in the field of health for validation. The final version of the program was pilot-tested on a group of six caregivers of in-patients with schizophrenia admitted at NIMHANS, Bangalore. Results: On the question of whether the program would help reduce the burden of caregivers, six of the ten experts (60% gave a rank of four of five (very much useful. Based on comments of the experts, several changes were made to the program. In the pilot-testing stage, more than 60% of the caregivers assigned a score of four and above (on a five-point Likert scale, five being extremely useful for the overall program, handouts distributed, and performance of the trainer. Qualitative feedback of the caregivers further endorsed the feasibility and usefulness of the program. Conclusion: The developed yoga program was found to be acceptable to caregivers of in-patients with schizophrenia.
Marceglia, Sara; Rossi, Elena; Rosa, Manuela; Cogiamanian, Filippo; Rossi, Lorenzo; Bertolasi, Laura; Vogrig, Alberto; Pinciroli, Francesco; Barbieri, Sergio; Priori, Alberto
The increasing number of patients, the high costs of management, and the chronic progress of the disease that prevents patients from performing even simple daily activities make Parkinson disease (PD) a complex pathology with a high impact on society. In particular, patients implanted with deep brain stimulation (DBS) electrodes face a highly fragile stabilization period, requiring specific support at home. However, DBS patients are followed usually by untrained personnel (caregivers or family), without specific care pathways and supporting systems. This projects aims to (1) create a reference consensus guideline and a shared requirements set for the homecare and monitoring of DBS patients, (2) define a set of biomarkers that provides alarms to caregivers for continuous home monitoring, and (3) implement an information system architecture allowing communication between health care professionals and caregivers and improving the quality of care for DBS patients. The definitions of the consensus care pathway and of caregiver needs will be obtained by analyzing the current practices for patient follow-up through focus groups and structured interviews involving health care professionals, patients, and caregivers. The results of this analysis will be represented in a formal graphical model of the process of DBS patient care at home. To define the neurophysiological biomarkers to be used to raise alarms during the monitoring process, neurosignals will be acquired from DBS electrodes through a new experimental system that records while DBS is turned ON and transmits signals by radiofrequency. Motor, cognitive, and behavioral protocols will be used to study possible feedback/alarms to be provided by the system. Finally, a set of mobile apps to support the caregiver at home in managing and monitoring the patient will be developed and tested in the community of caregivers that participated in the focus groups. The set of developed apps will be connected to the already
Huis in het Veld, J.G.; Verkaik, R.; Mistiaen, P.; Meijel, B. van; Francke A.L.
Background: Informal caregivers of people with dementia are challenged in managing the consequences of dementia in daily life. The objective of this meta-review was to synthesize evidence from previous systematic reviews about professional self-management support interventions for this group.
van der Voort, T. Y. G.; Goossens, P. J. J.; van der Bijl, J. J.
This study was aimed to highlight the factors which influence experienced burden, coping and needs for support of caregivers for patients with a bipolar disorder. Research articles meeting content and methodological quality criteria from January 1995 through October 2005 were reviewed. High
Miriam Teresa Domínguez Guedea
Full Text Available Conforme aumenta a quantidade de idosos, incrementa o número de pessoas que assumem o cuidado de um familiar idoso dependente funcional. As tarefas do cuidado demandam recursos econômicos, tempo, organização familiar e pessoal que geram uma sobrecarga que pode repercutir negativamente no cuidador. Um recurso que pode amenizar esses impactos é a existência de redes de apoio social, dentro das quais os familiares encontrem ajuda para satisfazer suas necessidades em situações cotidianas e de crise. O objetivo do estudo foi identificar as necessidades de apoio social experimentadas por cuidadores de familiares idosos com problemas de saúde. Análises de conteúdo revelaram as seguintes categorias temáticas: Necessidades emocionais pessoais e interpessoais, Necessidades de apoio econômico, Necessidades de apoio prático-instrumental, Necessidades de orientação e Percepção de recursos para responder às demandas do cuidado. Os resultados são discutidos à luz de outros estudos qualitativos sobre necessidades de cuidadores de idosos.With the increase of elders, increases the number of family members that take care of functional dependent elders. the duties of caregivers demand economic resources, time, personal and familiar organization that generate a burden that can negatively impact the caregiver. One resource that can withhold this impact is the social support network, where the family members can find help to satisfy their daily needs and crises. The objective of this study was to identify social support needs experienced by family caregivers of functional dependent elders. the content analysis revealed the following thematic categories: Emotional personal and interpersonal support needs, Economic support needs, Practical-instrumental support needs, Orientation support needs and Perception of resources to respond to the caregiver's activities demands. the results were discussed compared to other qualitative studies about the needs
Piil, K; Juhler, M; Jakobsen, J
training improves functional outcome and massage therapy reduces stress. Patients and caregivers found that telephone follow-up and a specialist nurse function was an effective and useful way to achieve information and support. Finally, psycho-education increased feelings of mastery among caregivers......, quantitative and mixed methods primary studies in mixed study reviews. RESULTS: The search yielded 914 unique publications, of which 9 were classified eligible for this review. There is preliminary evidence that cognitive group therapy improves memory skills in patients with high-grade gliomas, early physical...
Tyrrill, AL; Chan, A. David
The toolset of an Ada Programming Support Environment (APSE) being developed at North American Aircraft Operations (NAAO) of Rockwell International, is described. The APSE is resident on three different hosts and must support developments for the hosts and for embedded targets. Tools and developed software must be freely portable between the hosts. The toolset includes the usual editors, compilers, linkers, debuggers, configuration magnagers, and documentation tools. Generally, these are being supplied by the host computer vendors. Other tools, for example, pretty printer, cross referencer, compilation order tool, and management tools were obtained from public-domain sources, are implemented in Ada and are being ported to the hosts. Several tools being implemented in-house are of interest, these include an Ada Design Language processor based on compilable Ada. A Standalone Test Environment Generator facilitates test tool construction and partially automates unit level testing. A Code Auditor/Static Analyzer permits the Ada programs to be evaluated against measures of quality. An Ada Comment Box Generator partially automates generation of header comment boxes.
Alieske E H Dam
Full Text Available Informal caregivers of individuals with dementia have an increased risk to face social isolation due to progression of the disease. Online social media interventions might offer a new opportunity to increase access to social support and enhance positive interactions and openness in dementia care networks.This explorative pilot study describes (1 the development of an online social support intervention Inlife, and (2 the evaluation of the feasibility of this intervention and the measurements to assess its effectiveness.The Medical Research Council (MRC framework guided the development of the online social support intervention. This is a stepwise approach that integrates potential users' views with the development and validation of the program content. The program was developed by combining (1 individual caregiver interviews (n = 10, (2 focus group sessions with experts and web designers (n = 6, and (3 individual think-aloud tests (n = 2. Subsequently, a pilot study with informal caregivers was conducted (n = 25 to examine the program's feasibility and preliminary effectiveness. Online self-report measures were completed at baseline and at four follow-up time points.In total, 23 participants completed the newly developed Inlife intervention. Despite the high number of low-active users (17/23, 73%, Inlife had a good feasibility score of 7.1 (range: 1-10. The Calendar and Timeline were used most frequently and contributed to better care coordination and positive interactions.Although the Inlife platform received a sufficient feasibility rating, the uptake was not optimal. Therefore, the Inlife platform was adapted to limit the number of low-active users and improve user friendliness. Recommendations for additional treatment adherence were provided. The development according to the MRC framework and the sufficient feasibility rating of Inlife formed the basis for a future effectiveness study.
Dam, Alieske E H; van Boxtel, Martin P J; Rozendaal, Nico; Verhey, Frans R J; de Vugt, Marjolein E
Informal caregivers of individuals with dementia have an increased risk to face social isolation due to progression of the disease. Online social media interventions might offer a new opportunity to increase access to social support and enhance positive interactions and openness in dementia care networks. This explorative pilot study describes (1) the development of an online social support intervention Inlife, and (2) the evaluation of the feasibility of this intervention and the measurements to assess its effectiveness. The Medical Research Council (MRC) framework guided the development of the online social support intervention. This is a stepwise approach that integrates potential users' views with the development and validation of the program content. The program was developed by combining (1) individual caregiver interviews (n = 10), (2) focus group sessions with experts and web designers (n = 6), and (3) individual think-aloud tests (n = 2). Subsequently, a pilot study with informal caregivers was conducted (n = 25) to examine the program's feasibility and preliminary effectiveness. Online self-report measures were completed at baseline and at four follow-up time points. In total, 23 participants completed the newly developed Inlife intervention. Despite the high number of low-active users (17/23, 73%), Inlife had a good feasibility score of 7.1 (range: 1-10). The Calendar and Timeline were used most frequently and contributed to better care coordination and positive interactions. Although the Inlife platform received a sufficient feasibility rating, the uptake was not optimal. Therefore, the Inlife platform was adapted to limit the number of low-active users and improve user friendliness. Recommendations for additional treatment adherence were provided. The development according to the MRC framework and the sufficient feasibility rating of Inlife formed the basis for a future effectiveness study.
Cristancho-Lacroix, Victoria; Moulin, Florence; Wrobel, Jérémy; Batrancourt, Bénédicte; Plichart, Matthieu; De Rotrou, Jocelyne; Cantegreil-Kallen, Inge; Rigaud, Anne-Sophie
Web-based programs have been developed for informal caregivers of people with Alzheimer's disease (PWAD). However, these programs can prove difficult to adopt, especially for older people, who are less familiar with the Internet than other populations. Despite the fundamental role of usability testing in promoting caregivers' correct use and adoption of these programs, to our knowledge, this is the first study describing this process before evaluating a program for caregivers of PWAD in a randomized clinical trial. The objective of the study was to describe the development process of a fully automated Web-based program for caregivers of PWAD, aiming to reduce caregivers' stress, and based on the user-centered design approach. There were 49 participants (12 health care professionals, 6 caregivers, and 31 healthy older adults) that were involved in a double iterative design allowing for the adaptation of program content and for the enhancement of website usability. This process included three component parts: (1) project team workshops, (2) a proof of concept, and (3) two usability tests. The usability tests were based on a mixed methodology using behavioral analysis, semistructured interviews, and a usability questionnaire. The user-centered design approach provided valuable guidelines to adapt the content and design of the program, and to improve website usability. The professionals, caregivers (mainly spouses), and older adults considered that our project met the needs of isolated caregivers. Participants underlined that contact between caregivers would be desirable. During usability observations, the mistakes of users were also due to ergonomics issues from Internet browsers and computer interfaces. Moreover, negative self-stereotyping was evidenced, when comparing interviews and results of behavioral analysis. Face-to-face psycho-educational programs may be used as a basis for Web-based programs. Nevertheless, a user-centered design approach involving targeted
Sharer, Melissa; Cluver, Lucie; Shields, Joseph J; Ahearn, Frederick
Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS). Using the ecological model as a frame, data were drawn from a 2011 cross-sectional study of 1380 children classified as either orphaned by AIDS and/or living with an AIDS sick family member. The children were from high-poverty, high HIV-prevalent rural and urban communities in South Africa. Social support was analyzed in depth by examining the source (e.g. caregiver, sibling) and the type (e.g. emotional, instrumental, quality). These variables were entered into multiple regression analyses to estimate the most parsimonious regression models to show the relationships between social support and depression, anxiety, and PTS symptoms among the children. Siblings emerged as the most consistent source of social support on mental health. Overall caregiver and sibling support explained 13% variance in depression, 12% in anxiety, and 11% in PTS. Emotional support was the most frequent type of social support associated with mental health in all regression models, with higher levels of quality and instrumental support having the strongest relation to positive mental health outcomes. Although instrumental and quality support from siblings were related to positive mental health, unexpectedly, the higher the level of emotional support received from a sibling resulted in the child reporting more symptoms of depression, anxiety, and PTS. The opposite was true for emotional support provided via caregivers, higher levels of this support was related to lower levels of all mental health symptoms. Sex was significant in all regressions, indicating the presence of moderation.
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Pagán-Ortiz, Marta E; Cortés, Dharma E; Rudloff, Noelle; Weitzman, Patricia; Levkoff, Sue
One challenge faced by many family members caring for persons with dementia is lack of information about how to take care of others and themselves. This is especially important for persons from ethnic minority groups, because linguistically and culturally appropriate information is often not available. In response to these needs, we developed a web site for Spanish-speaking caregivers. Cuidatecuidador.com provides bilingual information on dementia and caregiver issues. Content was developed and then evaluated by caregivers residing in 3 countries. Findings suggest trends that exposure to information may be related to a higher sense of mastery and a reduction of depressive symptomatology.
Ruiz-Baqués, A; Contreras-Porta, J; Marques-Mejías, M; Cárdenas Rebollo, J M; Capel Torres, F; Ariño Pla, M N; Zorrozua Santisteban, A; Chivato, T
The increasing prevalence of food allergy affects both patients and their families. Objective: The aim of this study was to evaluate the impact of an online educational program designed for parents and caregivers of children with food allergies. The program was developed by a multidisciplinary group comprising health care professionals, researchers, and expert patients under the participatory medicine model. Participants took a 2-week online educational program covering major topics in food allergy management. General knowledge about the disease, symptoms, treatment, and topics relevant to families' daily lives were evaluated. The contents included educational videos, online forums, and live video chats. A pretest/posttest questionnaire survey was used to evaluate the impact of the program. A total of 207 participants enrolled in the educational program, which was completed by 130 (62.8%). Knowledge acquisition improved significantly following participation in the program in 15 out of 30 items (50%), reaching P<.001 for 8 items (26.7%). Of the 207 participants who started the program, 139 (67.1%) visited online forums, and 27.5% attended video chats. Average overall satisfaction with the educational program was 8.78 (on a scale of 0 to 10). The results obtained show that parents improved their knowledge in all areas of food allergy. The high level of satisfaction among participants suggests that digital learning tools are effective and motivational, enabling patients to acquire appropriate knowledge and thus increasing their quality of life.
Lui, May H-L; Lee, Diana T F; Greenwood, Nan; Ross, Fiona M
To describe the relationship between self-appraised problem-solving abilities and psychological distress, burden and perceived social support in informal, family stroke caregivers. Previous research suggests that self-appraised problem-solving abilities play a significant role in the well-being of family caregivers of patients with chronic illness. However, little is known about its role in caregivers of stroke survivors. Prospective correlational study. One week before discharge, 103 family caregivers of survivors of a first stroke were assessed for their perceived problem-solving abilities, social support, anxiety, depression and physical well-being. At three months postdischarge, 85 of these caregivers (83% retention) were reassessed on the same measures. In addition, their levels of burden and perceived difficulties were also measured. Using multiple regression, overall self-appraised problem-solving abilities and its subscale 'confidence in problem-solving' at one week before discharge were significant predictors of caregiver perceived social support (R(2) = 29%) and perceived physical well-being (R(2) = 42%) at three months postdischarge. Other relationships were non-significant. Caregivers' perceived social support and physical well-being were significantly predicted by confidence in problem-solving. This study is timely given the challenges facing health systems in Hong Kong to effectively manage chronic illness through family-centred care. The significant relationships between caregiver self-appraised problem-solving, perceived social support and well-being suggest that interventions maximising caregiver confidence in problem-solving might be valuable in supporting family caregivers of stroke survivors. Nurses working with families caring for stroke survivors both close to discharge and in the early transition stages back at home may be in an ideal position to offer this support. © 2011 Blackwell Publishing Ltd.
Full Text Available Objective.This work sought to determine the social representations conferred by caregivers, teachers, and children to food, health, and nutrition and the school breakfast program for children from three to seven years of age in the city of San Luis Potosí, San Luis Potosí, Mexico, through identifying a knowledge and practices and b meanings attributed on health and nutrition of children from three to seven years of age and on the school breakfast program. Methods. This was a qualitative health study. The sample included 33 mothers, 3 grandmothers, 1 father, 30 children from 3 to 7 years of age, and 8 teachers who signed an informed consent. The data were collected through a semi-structured interview and treated through content analysis modality thematic analysis. Results. The analysis yielded the categories: knowledge on food, the health-feeding relation, customs and practices of the child's feeding, and meanings of the school breakfast program. Conclusion. On the reflection on the representations of the different players included in the school breakfast program, elements become manifest that would support an educational intervention by nursing, which would have to be based on the family as the central figure to provide good nutrition and teach good habits.
Gallegos-Martínez, Josefina; Reyes-Hernández, Jaime
This work sought to determine the social representations conferred by caregivers, teachers, and children to food, health, and nutrition and the school breakfast program for children from three to seven years of age in the city of San Luis Potosí, San Luis Potosí, Mexico, through identifying a) knowledge and practices and b) meanings attributed on health and nutrition of children from three to seven years of age and on the school breakfast program. This was a qualitative health study. The sample included 33 mothers, 3 grandmothers, 1 father, 30 children from 3 to 7 years of age, and 8 teachers who signed an informed consent. The data were collected through a semi-structured interview and treated through content analysis modality thematic analysis. The analysis yielded the categories: knowledge on food, the health-feeding relation, customs and practices of the child's feeding, and meanings of the school breakfast program. On the reflection on the representations of the different players included in the school breakfast program, elements become manifest that would support an educational intervention by nursing, which would have to be based on the family as the central figure to provide good nutrition and teach good habits.
Pagán-Ortiz, Marta E.; Dharma E. Cortés; Rudloff, Noelle; Weitzman, Patricia; Levkoff, Sue
One challenge faced by many family members caring for persons with dementia is lack of information about how to take care of others and themselves. This is especially important for persons from ethnic minority groups, since linguistically and culturally appropriate information is often not available. In response to these needs, we developed a website for Spanish-speaking caregivers. Cuidatecuidador.com provides bilingual information on dementia and caregiver issues. Content was developed and ...
Carla Cristiane Becker Kottwitz Bierhals
Full Text Available ABSTRACT Objective: to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program in a Primary Health Service in the South of Brazil. Methods: using Bradshaw's taxonomy of needs to explore the caregiver's felt needs (stated needs and normative needs (defined by professionals, a mixed exploratory study was conducted in three steps: Descriptive quantitative phase with 39 older adults and their caregiver, using a data sheet based on patient records; Qualitative exploratory phase that included 21 caregiver interviews, analyzed by content analysis; Systematic observation, using an observation guide with 16 caregivers, analyzed by descriptive statistics. Results: the felt needs were related to information about instrumental support activities and subjective aspects of care. Caregivers presented more normative needs related to medications care. Conclusion: understanding caregivers' needs allows nurses to plan interventions based on their particularities.
Full Text Available Abstract Background To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia. Methods Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 – Dec 2016. Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g. telephone, computer; then assessed against the Effective Practice and Organisation of Care (EPOC methodological criteria for research design. Impact on health-related outcomes; and the acceptability, feasibility and utilisation of interventions were also assessed. Results The number of publications increased by 13% each year (p < 0.001. Half were descriptive studies (n = 92, 50% describing caregiver views on acceptability, access or utilization of technology. The remainder (n = 89, 48% reported on interventions designed to improve caregiver outcomes. Only 34 met EPOC design criteria. Interventions were delivered via computer (n = 10, multiple modalities (n = 9 or telephone (n = 15. Interventions that incorporated various elements of psycho-education, peer support, skills training and health assessments led to improvements in caregiver wellbeing. While largely acceptable, utilisation of computer-based interventions was variable, with use often decreasing over time. Conclusion Interventions delivered via telephone and computer have the potential to augment existing dementia care. High-quality trials are required to make clear recommendations about the types of interventions that are most effective. Those that provide caregivers with: access to practical strategies to manage care of the person with dementia and their own wellbeing, advice and support from peers and/or clinicians; and that target the dyad should be explored.
Hori, Miyako; Kubota, Masakazu; Kinoshita, Ayae
The increase in the number of people suffering from dementia because of aging is a serious problem for caregivers since the feature of this pathology is irreversible and advancing. We designed an intervention study with Skype and webcam for patient with dementia being cared at home by their caregiver to prevent a further memory deterioration (seriousness of dementia) and to reduce a care burden as well. For a period of 12 weeks, a 4-patient-caregiver pair communicated with a hospital nurse through the computer for 30 minutes once a week. The patient and the caregiver worked as a pair. From the beginning of the intervention period, the intervention group and control group (n = 4) were assessed with cognitive scale, ADL scale, care burden scale and depression scale for the caregiver, and the like once in 4 weeks for 12 weeks. The initial report on the 8th week showed signs of improvement on the intervention group in HDS-R, also it improved the scale of moral of the caregiver as their scale of depression decreased.
Ostwald, Sharon K; Godwin, Kyler M; Cron, Stanley G; Kelley, Carolyn P; Hersch, Gayle; Davis, Sally
This randomized trial compared 6- and 12-month outcomes of a home-based psychoeducational program to mailed information provided to 159 survivors of stroke (SS) and their spousal caregivers (CG). SS (age 50+) and CG were recruited as dyads post-discharge from inpatient rehabilitation. All dyads received mailed information for 12 months. Dyads randomized to the home-based group received an average of 36.7 h of psychoeducation over 6 months. Health status, depression, stress, burden, coping, support, mutuality and function were obtained on all dyads. Repeated measures analysis with linear mixed models was used to compare the groups for change over time in the outcome variables. Both groups demonstrated less depression and stress over time. Compared to the mailed information group, SS in the home-based group demonstrated significantly improved self-reported health and cognitive function; CG demonstrated significantly improved self-reported health and coping strategies. Mutuality and social support decreased in both groups. The home-based intervention was effective in improving self-reported health, coping skills in CG and cognitive functioning in SS. However, the finding that dyads in both groups demonstrated decreased depression and stress suggests that providing repeated doses of relevant, personalized information by mail may result in positive changes. A stroke affects both the stroke survivor and the spousal caregiver, so nurses and therapists should use multicomponent strategies to provide education, support, counseling and linkages to community resources to ease the transition from hospital to home. Stroke may have a negative impact on the dyad's relationship with each other and also on the availability of support people in their lives during the 12 months after hospital discharge. Comprehensive stroke programs should encourage dyads to attend support groups and to seek individual and group counseling, as needed. Establishing an ongoing relationship with
Li, Andrew; Shaffer, Jonathan; Bagger, Jessica
We draw on the cross-domain model of work-family conflict and conservation of resources theory to examine the relationship between disability caregiving demands and the psychological well-being of employed caregivers. Using a sample of employed disability caregivers from a national survey, we found that the relationship between caregiving demands and family-to-work conflict was stronger when employees experienced high levels of strain from family. Additionally, we found high levels of family to-work conflict were subsequently associated with decreases in life satisfaction and increases in depression, but only when perceived supervisor support was low. Overall, our findings suggest an indirect relationship between caregiving demands and psychological well-being that is mediated by family-to-work conflict and is conditional on family strain and perceived supervisor support. The theoretical and practical implications of these findings are discussed. PsycINFO Database Record (c) 2014 APA, all rights reserved.
Fridman, Moshe; Banaschewski, Tobias; Sikirica, Vanja; Quintero, Javier; Chen, Kristina S
Attention-deficit/hyperactivity disorder (ADHD) is one of the most common childhood psychiatric disorders and negatively impacts caregivers' lives. Factors including barriers to accessing care, dissatisfaction with support services, and lack of caregiver resources may contribute to this. To report caregivers' experiences of ADHD diagnosis, behavioral therapy (BT), and supportive care for children/adolescents with ADHD. The Caregiver Perspective on Pediatric ADHD (CAPPA) survey included caregivers of children/adolescents (6-17 years) from ten European countries who were currently receiving/had received ADHD pharmacotherapy in the previous 6 months. Caregivers reported experiences of obtaining an ADHD diagnosis, access to BT, availability of caregiver resources, and level of health care/school support. Pan-EU and country-specific descriptive statistics are reported; responses were compared across countries. Of 3,616 caregivers, 66% were female. Mean age of children/adolescents was 11.5 years; 80% were male. Mean time from the first doctor visit to diagnosis was 10.8 (95% confidence interval 10.2, 11.3) months; 31% of caregivers reported the greatest degrees of difficulty in obtaining an ADHD diagnosis; 44% of children/adolescents did not receive BT. Forty-seven percent of caregivers reported that sufficient resources were available, 44% were "very satisfied"/"satisfied" with medical care, and 50% found health care providers "very supportive"/"somewhat supportive". Mainstream schools were attended by 82% of children/adolescents. Of those, 67% of caregivers thought schools could help more with the child/adolescent's ADHD and 48% received extra help/special arrangement. Results varied significantly between countries (P<0.001, all parameters). Almost a third of caregivers reported a high degree of difficulty in obtaining an ADHD diagnosis for their child/adolescent, less than half felt that sufficient resources were available, and gaps in support from health care
Corbière, M.; Brouwers, E.P.M.; Lanctôt, N.; van Weeghel, J.
Purpose Supported employment (SE) programs are evidence-based programs offered to people with severe mental illness to facilitate obtaining and keeping competitive work. However, significant variations in individuals’ vocational success may be partly explained by differences in their employment
Roberts, Megan Y; Kaiser, Ann P; Wolfe, Cathy E; Bryant, Julie D; Spidalieri, Alexandria M
In this study, the authors examined the effects of the Teach-Model-Coach-Review instructional approach on caregivers' use of four enhanced milieu teaching (EMT) language support strategies and on their children's use of expressive language. Four caregiver-child dyads participated in a single-subject, multiple-baseline study. Children were between 24 and 42 months of age and had language impairment. Interventionists used the Teach-Model-Coach-Review instructional approach to teach caregivers to use matched turns, expansions, time delays, and milieu teaching prompts during 24 individualized clinic sessions. Caregiver use of each EMT language support strategy and child use of communication targets were the dependent variables. The caregivers demonstrated increases in their use of each EMT language support strategy after instruction. Generalization and maintenance of strategy use to the home was limited, indicating that teaching across routines is necessary to achieve maximal outcomes. All children demonstrated gains in their use of communication targets and in their performance on norm-referenced measures of language. The results indicate that the Teach-Model-Coach-Review instructional approach resulted in increased use of EMT language support strategies by caregivers. Caregiver use of these strategies was associated with positive changes in child language skills.
Carlozzi, Noelle E; Lange, Rael T; French, Louis M; Sander, Angelle M; Freedman, Jenna; Brickell, Tracey A
To identify barriers and supports that caregivers of individuals with military-related traumatic brain injury (TBI) encounter when navigating the military healthcare system; this information will be used as the foundation of a new patient-reported outcome measure. Community. Forty-five caregivers of service members and veterans (SMV) who sustained a medically documented mild, moderate, severe, or penetrating TBI. Latent content analysis. Nine focus group discussions of barriers and supports to navigating the military healthcare system and community resources. Latent content analysis indicated that caregivers discussed barriers (66%) and supports (34%) to obtaining care within the military healthcare system and the community. Caregivers most frequently discussed SMVs' interactions with healthcare, their own interactions with healthcare, family care, and community organizations. Caregivers confront numerous challenges while pursuing healthcare services. Although much of the discussion focused on barriers and perceived unmet needs within the military healthcare system, caregivers also recognized supports within the military healthcare system and general community. Increased attention to accessibility and quality of services, as well as reducing financial burden, can lead to improved health-related quality of life for caregivers and their SMVs.
Cristancho-Lacroix, Victoria; Wrobel, Jérémy; Cantegreil-Kallen, Inge; Dub, Timothée; Rouquette, Alexandra; Rigaud, Anne-Sophie
Although several face-to-face programs are dedicated to informal caregivers of persons with dementia, they are not always accessible to overburdened or isolated caregivers. Based on a face-to-face intervention program, we adapted and designed a Web-based fully automated psychoeducational program (called Diapason) inspired by a cognitive approach. This study aimed to evaluate through a pilot unblinded randomized controlled trial the efficacy and acceptability of a Web-based psychoeducational program for informal caregivers of persons with Alzheimer's disease (PWAD) based on a mixed methods research design. We recruited and randomized offline 49 informal caregivers of a PWAD in a day care center in Paris, France. They either received the Web-based intervention and usual care for 3 months (experimental group, n=25) or only usual care (control group, n=24). Caregivers' perceived stress (PSS-14, primary outcome), self-efficacy, burden, perceived health status, and depression (secondary outcomes) were measured during 3 face-to-face on-site visits: at baseline, at the end of the program (month 3), and after follow-up (month 6). Additionally, semistructured interviews were conducted with experimental group caregivers at month 6 and examined with thematic analysis. Intention-to-treat analysis did not show significant differences in self-perceived stress between the experimental and control groups (P=.98). The experimental group significantly improved their knowledge of the illness (d=.79, P=.008) from baseline to month 3. Of the 25 participants allocated to the experimental group, 17 (71%) finished the protocol and entirely viewed at least 10 of 12 online sessions. On average, participants used the website 19.72 times (SD 12.88) and were connected for 262.20 minutes (SD 270.74). The results of the satisfaction questionnaire showed that most participants considered the program to be useful (95%, 19/20), clear (100%, 20/20), and comprehensive (85%, 17/20). Significant
Identifying gaps in the literature regarding Puerto Rican childbearing women and intergenerational caregiving will facilitate future nursing practice and research regarding the amelioration of poor maternal-fetal outcomes. A literature search using PubMed and CINAHL, sensitized by Bronfenbrenner's Ecological-Environmental Model on Latinas and intergenerational caregiving, generated 18 peer-reviewed research articles (2009-2014) for analysis. Categories and themes included the following: Latinas are the primary caregivers within their families and communities; caregiving is described; however, none of the studies classified caregiving as intergenerational and none sought to understand the overall impact on Latinas simultaneously caring for other members of their caregiving networks. Gaps in the literature need to be addressed to facilitate design of health care programs to address disparities and increase supports for childbearing Latinas involved in intergenerational caregiving who are at risk for higher incidences of challenging life experiences.
van Driessche, Anne; Jotheeswaran, A T; Murthy, G V S; Pilot, Eva; Sagar, Jayanthi; Pant, Hira; Singh, Vivek; Dpk, Babu
Parents of children with hearing impairment are at increased risk of mental health morbidities. We examined the predictive factors associated with caregiver's strain and psychological morbidities in parents and family caregivers of children with hearing impairment. In total, n = 201 parents and family caregivers of children with and without hearing impairment aged 3 to 16 years were recruited. Caregiver's strain and psychological morbidities were measured using the Zarit Burden scale and the World Health Organization's Self-Reporting Questionnaire (SRQ-20). Presence of behavioural problems in children was measured using the Strengths and Difficulties Questionnaire. After adjustment, low educational attainment and domestic violence were found to be associated with caregiving strain, whereas dissatisfaction with social support from family, behavioural problems in children, and domestic violence strongly predicted psychological morbidities. Addressing the mental healthcare needs of parents may help in downsizing the impact of psychological morbidities on the well-being of children with hearing impairment.
Marty, Ana H.; Readdick, Christine A.; Walters, Connor M.
Parent-child attachment has been extensively confirmed as a central contributing factor to children's positive developmental outcomes. Theory and research imply that the non-parental caregiver is an important figure that may assist parents in the development of a secure attachment relationship with their infants. Specific practices that increase…
Johnson, Stacy R.; Seidenfeld, Adina M.; Izard, Carroll E.; Kobak, Roger
Preschool children from economically disadvantaged families often experience difficulties in developing prosocial behavior. Risk associated with depressive symptomatology in caregivers (parents and guardians) may further compound these difficulties. The overall objective of the present study was to examine the compensatory effect of Head Start…
Krick Oborn, Kellie M.; Johnson, LeAnne D.
Recommended practices for Part C early childhood special education home visitors encourage use of caregiver coaching strategies to enhance learning opportunities within the natural routines of infants and toddlers. The purpose of this study was to evaluate the effects of a multicomponent professional development intervention on home visitors' use…
Paul B. Perrin
Full Text Available Background. Multiple sclerosis (MS rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory, health-related quality of life (HRQOL; Short Form-36, and social support (Interpersonal Support Evaluation List-12 in 81 (66.7% women Mexican MS caregivers. Results. As compared to men caregivers, women had lower mental health (p=0.006, HRQOL (p<0.001, and social support (p<0.001. This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, p=0.018 and for nearly three times as many months (66.31 versus 24.30, p=0.002. Conclusions. Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America—particularly for women caregivers—should address the influence of gender-role conformity on care and psychosocial functioning.
Guldin, Mai-Britt; Vedsted, Peter; Zachariae, Robert; Olesen, Frede; Jensen, Anders Bonde
There is little research on complicated grief (CG) in family caregivers in palliative care. The aim of the study was to assess the levels of complicated grief and depression in family caregivers after the death of a relative with cancer, to identify their need for support, to compare the palliative team staff's risk assessment of the relatives' grief reaction with measured levels of CG and depression, and to assess the use of bereavement support. All 114 eligible family caregivers to deceased patients treated in a palliative care unit in the year 2006 were asked to participate in the study, and 87 (77%) accepted. The participants completed a postal questionnaire 2, 6, 13, and 18 months after the loss measuring complicated grief (Inventory of Complicated Grief, Revised), depression (Beck's Depression Inventory II), and their use of bereavement services. The palliative team staff completed a form 1 month post-loss with their clinical risk assessment of the family caregivers' levels of complicated grief and need for support. The prevalence of moderate to severe depression and CG was 15% and 40%, respectively, at 6 months post-loss. Professional risk assessment showed a sensitivity of 55% for CG and of 27% for depression and a specificity of 86% for depression and 63% for CG. The positive predictive value was 27% for depression and 21% for CG. Use of bereavement services was observed in 36% of the cases at 6 months after the loss. The proportion of bereaved with CG or depression at 6 months who had received bereavement services was 47% and 64%, respectively. The results suggest that a substantial number of family caregivers of diseased palliative care patients are at risk of developing CG and depression following their loss. While early identification of those at risk of developing CG could be helpful, the risk assessment of professionals may lack in precision. The results indicate that bereavement services could be utilized in a more targeted and perhaps more
San Antonio, Patricia; Simon-Rusinowitz, Lori; Loughlin, Dawn; Eckert, J Kevin; Mahoney, Kevin J; Ruben, Kathleen Ann Depretis
This paper addresses four family policy questions that policy makers often ask about consumer-directed services, examining issues such as quality, suitability, and fraud and abuse. Responses to these questions evolved from the experiences of diverse elder consumers and their caregivers who participated in IndependentChoices, the Arkansas site of the Cash and Counseling Demonstration and Evaluation (CCDE) program. Building on CCDE evaluation survey data, this analysis of in-home interviews with participants discussing their experiences of receiving, giving, and managing care demonstrates how the program allows consumers choices so they receive the services they want. At the same time, program flexibility allows policy makers to safeguard both consumers and program resources through the use of supports such as representatives, state consultants, and fiscal intermediaries. This article demonstrates how the Cash and Counseling model can address the needs of both consumers with diverse disabilities and policy makers.
Full Text Available This study sought to determine the effect of participation in support groups on the depression, anxiety and stress level of caregivers of patients with Alzheimer. This study was a single blind randomized clinical controlled trial (RCT with 80 family caregivers of people with Alzheimer’s (per group=40. The intervention group participated in eight sessions 1.5- 2 hours in support groups. The tool used in this study was the DASS-21 questionnaire for measuring depression, anxiety and stress level of the caregivers, analysis of parametric data, using SPSS version 21. Findings showed, participation in support groups showed no significant difference on depression, anxiety and stress in family caregivers of Alzheimer patients in the control group and the intervention group. Given that caring for these patients by their family members are very sensitive and costly issues for policy makers and health service providers, community and families of these patients.
Breastfeeding, natural and healthy though it is, can be tough, particularly in communities where there is little encouragement for breastfeeding mothers. In one survey, when asked to identify the barriers to breastfeeding, mothers most often cited busy schedules, embarrassment, and lack of support (Best Start Social Marketing 1997). Child care…
Loerzel, Victoria Wochna; Crosby, William Woodfin; Reising, Ellen; Sole, Mary Lou
Home care of a patient with a tracheostomy after surgery for head and neck cancer requires caregivers to be comfortable with handling medical equipment and to be competent and proficient with completing many new and complex tasks. However, the responsibility of managing an artificial airway may increase caregiver anxiety, which may subsequently lead to improper care of the patient with head and neck cancer and increase the risk for complications and rate of readmission to oncology units. This article describes the development and outcomes of the Tracheostomy Care Anxiety Relief Through Education and Support (T-CARES) program, developed in response to high readmission rates for patients with head and neck cancer discharged with a tracheostomy. T-CARES consists of an 18-minute video demonstration, group discussion, return demonstration, and skills assessment. The course also incorporates hands-on practice on a low-cost anatomical task trainer created by the authors. A significant reduction in caregiver anxiety was noted after participation in the T-CARES program. T-CARES and similar programs can be developed to teach self-care for a variety of conditions that patients and caregivers are expected to manage at home.
Piette, John D; Striplin, Dana; Marinec, Nicolle; Chen, Jenny; Trivedi, Ranak B; Aron, David C; Fisher, Lawrence; Aikens, James E
Mobile health (mHealth) interventions may improve heart failure (HF) self-care, but standard models do not address informal caregivers' needs for information about the patient's status or how the caregiver can help. We evaluated mHealth support for caregivers of HF patients over and above the impact of a standard mHealth approach. We identified 331 HF patients from Department of Veterans Affairs outpatient clinics. All patients identified a "CarePartner" outside their household. Patients randomized to "standard mHealth" (n=165) received 12 months of weekly interactive voice response (IVR) calls including questions about their health and self-management. Based on patients' responses, they received tailored self-management advice, and their clinical team received structured fax alerts regarding serious health concerns. Patients randomized to "mHealth+CP" (n=166) received an identical intervention, but with automated emails sent to their CarePartner after each IVR call, including feedback about the patient's status and suggestions for how the CarePartner could support disease care. Self-care and symptoms were measured via 6- and 12-month telephone surveys with a research associate. Self-care and symptom data also were collected through the weekly IVR assessments. Participants were on average 67.8 years of age, 99% were male (329/331), 77% where white (255/331), and 59% were married (195/331). During 15,709 call-weeks of attempted IVR assessments, patients completed 90% of their calls with no difference in completion rates between arms. At both endpoints, composite quality of life scores were similar across arms. However, more mHealth+CP patients reported taking medications as prescribed at 6 months (8.8% more, 95% CI 1.2-16.5, P=.02) and 12 months (13.8% more, CI 3.7-23.8, Phealth during weekly IVR calls. Compared to a relatively intensive model of IVR monitoring, self-management assistance, and clinician alerts, a model including automated feedback to an informal
Prick, Anna-Eva; de Lange, Jacomine; Scherder, Erik; Pot, Anne Margriet
Dementia affects the mood of people with dementia but also of their caregivers. In the coming years, the number of people with dementia will increase worldwide and most of them will continue to live in the community as long as possible. Home-based psychosocial interventions reducing the depressive symptoms of both people with dementia and their caregivers in their own home are highly needed. This manuscript describes the design of a Randomised Controlled Trial (RCT) of the effects of a home-based exercise and support programme for people with dementia and their caregivers. The aim is to randomly assign 156 dyads (caregiver and dementia diagnosed person) to an intervention group or a comparison group. The experimental group receives a home programme in which exercise and support for the people with dementia and their caregivers are combined and integrated. The comparison group receives a minimal intervention. Primary outcomes are physical health (people with dementia) and mood (people with dementia and caregivers). In addition, to get more insight in the working components of the intervention and the impact of the intervention on the relationship of the dyads a qualitative sub-study is carried out. This study aims to contribute to an evidence-based treatment to reduce depressive symptoms among people with dementia and their caregivers independently living in the community. The study has been registered at the Netherlands National Trial Register (NTR), which is connected to the International Clinical Trials Registry Platform of the WHO. NTR1802.
... Health and Human Services Administration for Children and Families 45 CFR Parts 301, 302, 303, 305, and 308 Child Support Enforcement Program; Intergovernmental Child Support; Final Rule #0;#0;Federal... AND HUMAN SERVICES Administration for Children and Families 45 CFR Parts 301, 302, 303, 305, and 308...
Chen, Min-Chia; Chiu, Yi-Chen; Wei, Pi-Mei; Hsu, Wen-Chuin
The long-term care of cognitively impaired patients with concomitant behavioral problems brings great stress and burdens to family caregivers. The present article describes a family caregiver with multiple chronic diseases who concurrently shouldered primary care responsibilities for her husband, a patient with mild cognitive impairment, problematic behaviors, and medication non-adherence issues. The period of care was between September 23rd and December 29th, 2015. Data on physiological, psychological, and social burdens were collected based on a stress process model for family caregiving. We then applied a home-based, individually tailored intervention, which included nursing education, skills training, listening/counseling, and resource connecting, that effectively helped the family caregiver reduce her burdens. Our assessment identified nursing-care-related problems as the primary source of caregiver burden in this case, with identified stressors including a lack of knowledge regarding patient care, medication management problems, sleep disorders, and inadequate social resources. Using continuous care interactions, we established a trust relationship with the family caregiver, prioritized her needs, and provided dementia care knowledge and skills, which gradually improved her caregiving competence. Our instruction included increasing caregiver understanding of the disease course of dementia, related problematic behaviors, and medication management. Our intervention enhanced the disease awareness of the caregiver and helped her become more positive about her caregiving tasks. Therefore, the negative impacts on her family were reduced. Social support and long-term care resources further reduced her burden and improved her quality of life.
corporations have joined the America Supports You program—including AT&T, Checkers, the Grand Ole Opry, McDonald’s, NASCAR , the PGA TOUR, Ringling Bros...provide NASCAR with a list of on-site and homefront components we are most interested in and rank these items in order of priority. We believe...participated in Fourth of July festivities, the 2006 Armed Forces Bowl, Daytona 500 NASCAR event, and a Houston Texans Football game. However, Y3K Grafix
Clarke, David James; Godfrey, Mary; Hawkins, Rebecca; Sadler, Euan; Harding, Geoffrey; Forster, Anne; McKevitt, Christopher; Dickerson, Josie; Farrin, Amanda
Medical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings. Contextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified. Where implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how
Full Text Available Abstract Background The care of patients with a life-threatening, progressive and far advanced illness in a home-care setting requires appropriate individual care and requires the active support of family caregivers. General practice teams are usually the primary care givers and first contact and are best placed to offer support to family caregivers and to recognise and respond to the burden of care giving on family members. The aim of this project is to develop a best practice model for engaging with and supporting family caregivers. Findings The project is framed as an exploratory trial for a subsequent implementation study, covering phases 0, I and II of the MRC (Medical Research Council framework for development, design and evaluation of complex interventions. The project is a multi-method procedure and has two phases. In the first phase, which has already been completed, we used a reflective practice procedure where general practice teams were asked about how they currently deal with family caregivers. In the second phase, a participatory action research approach aims to improve identification and response to when support is necessary for family caregivers. Ten participating general practice teams each enrol 40 eligible patients and their family caregiver, to identify structures and tools feasible for use in their practice. Standardised self-reported questionnaires (Burden Scale for Family Caregivers and Quality of Life Questionnaire Core 15 Palliative are being applied at study inclusion (prior to or during the implementation period and after 6 and 12 months to explore implementation effects. Qualitative assessment of general practice teams’ experiences will be triangulated with the quantitative evaluation of the implementation. Discussion This two-step approach, which is appropriate to primary palliative care in the German health care context, will enable general practice teams to develop feasible, acceptable and successful strategies
Occupational therapy practitioners play a significant role in supporting adults with Alzheimer's disease and related major neurocognitive disorders, as well as their caregivers, through all phases of the disease process. This editorial highlights the systematic reviews completed in collaboration with the American Occupational Therapy Association's Evidence-Based Practice Project that summarize the evidence for the effectiveness of interventions within the scope of occupational therapy practice for this population. Readers are encouraged to translate and integrate this updated knowledge into everyday practice. Copyright © 2017 by the American Occupational Therapy Association, Inc.
Deborah S. Boroughs
Full Text Available Until 25 years ago, there were limited options for long-term mechanical ventilation of children, and the majority of children were cared for in hospitals. However, with improving technology, the pediatric intensive care unit has moved from the hospital to a home setting, as children with increasingly complex healthcare needs are now often cared for by family members. One of the most complex care conditions involves ventilator and tracheostomy support. Advanced respiratory technologies that augment natural respiratory function prolong the lives of children with respiratory compromise; however, this care often comes with serious risks, including respiratory muscle impairment, respiratory failure, and chronic pulmonary disease. Both non-invasive assisted ventilation and assisted ventilation via tracheostomy can prolong survival into adulthood in many cases; however, mechanical ventilation in the home is a high-stakes, high risk intervention. Increasing complexity of care over time requires perpetual skill training of family caregivers that is delivered and supported by professional caregivers; yet, opportunities for additional training outside of the hospital rarely exist. Recent data has confirmed that repetitive caregiver education is essential for retention of memory and skills in adult learners. This study analyzes the use of continued education and training in the community for family caregivers of ventilator-dependent children diagnosed with spinal muscular atrophy (SMA.
Clawson, Ashley H; Borrelli, Belinda; McQuaid, Elizabeth L; Dunsiger, Shira
Caregiver depressed mood and stress are associated with increased child asthma functional morbidity (AFM) and secondhand smoke exposure (SHSe), whereas social support (SS) reduces risk. This study extends previous literature by examining (1) longitudinal patterns of pediatric AFM and SHSe and (2) how caregiver stress, depressed mood, and SS are related to child SHSe and AFM changes. Participants were 334 caregivers who smoked, had a child with asthma, and were enrolled in a smoking cessation induction/asthma intervention. SHSe and AFM were measured at baseline and 4, 6, and 12 months. All measures were caregiver self-report. We used an autoregressive latent trajectory model to examine the intercept, linear, and quadratic growth factors and autoregressive and cross-lagged effects of SHSe and AFM. After an asthma exacerbation, decreases in child AFM and SHSe were followed by respective increases over time. Child SHSe at 4 months and 6 months predicted subsequent child AFM. Autoregressive paths were significant for only AFM. Higher baseline caregiver depressed mood and stress predicted higher baseline child AFM but not other growth factors. Higher baseline caregiver self-esteem SS was associated with only lower baseline child AFM and fewer increases in AFM across time. Exploratory analyses indicated higher baseline caregiver depressed mood and stress were associated with less-favorable changes in child SHSe and AFM. Caregiver depressed mood, stress, and SS should be considered when addressing pediatric SHSe and AFM. Caregiver support may be needed to maintain intervention gains. (PsycINFO Database Record (c) 2016 APA, all rights reserved).
Uicab-Pool, Gloria de Los Angeles; Ferriani, Maria das Graças Carvalho; Gomes, Romeu; Pelcastre-Villafuerte, Blanca
This study was carried out between January and April 2008 with 14 caregivers of children younger than 5 years residing in Tizimín city, Mexico. It aimed to understand the social representations of eating and the Programa Oportunidades [Opportunity Program] held by caregivers taking into account their social and cultural context. This qualitative investigation with an ethnographic approach was based on participant observation and semi-structured interviews. Two empirical categories emerged: 1) feeding and 2) an aid. The first refers to the caregivers' representation of eating patterns of children younger than 5 years and the second reveals that the program is considered an aid, which favors and helps caregivers to meet part of their needs. The study achieved the proposed objectives since it enabled us to understand caregivers in the complex task of feeding these children and also to propose strategies in several spheres to improve infant nutrition.
Given, B; Stommel, M; Collins, C; King, S; Given, C W
In this paper three categories of variables were identified to predict spouses' reactions to caregiving roles: patient characteristics, the caregiving environment, and characteristics of the caregiver. Measures of these variables were administered to 159 spouse caregivers. Four domains of caregivers' responses were identified: negative emotional reactions, feelings of responsibility for the patient, feelings of abandonment by family, and impact of caregiving on daily schedules. These domains were influenced most by patient negative behaviors, physical health, and age, and by caregiver age, employment, and emotional status. Amount of assistance, affective support, and hours of care also were predictive of spouse responses.
Quadflieg, Norbert; Schädler, Daniela; Naab, Silke; Fichter, Manfred M
This paper presents the results of a randomized controlled trial measuring the efficacy of a video-based skills training to decrease burden and psychological distress in caregivers of inpatients treated for an eating disorder in specialized hospital units. Two hundred eighty-five caregivers were randomized to either the video intervention (N = 147) or the control group (N = 138). Caregivers' primary outcomes were assessed via Eating Disorder Symptom Impact Scale, Accommodation and Enabling Scale and General Health Questionnaire-12 at baseline and three-months follow-up. Acceptability of the intervention was high. Receiving additional external professional help like psychotherapy or clinical counselling was identified as a moderator contributing to the efficacy of the intervention. Caregivers' burden (Eating Disorder Symptom Impact Scale) and psychological distress (General Health Questionnaire-12) were reduced by the intervention but not caregivers' accommodating behaviours (Accommodation and Enabling Scale). The video training is a promising approach and effective supplement for caregivers of patients with an eating disorder. Additional professional help to caregivers increases the effectiveness of the intervention. Copyright © 2017 John Wiley & Sons, Ltd and Eating Disorders Association. Copyright © 2017 John Wiley & Sons, Ltd and Eating Disorders Association.
Leal, Mi; Sales, R; Ibáñez, E; Giner, J; Leal, C
Due to the change in the health care model for mental patients focused on the hospital to community care in recent decades, schizophrenic patients live with their families. This study aims to study the burden of family members or caregivers of schizophrenic patients before and after the application of a specific psychoeducational program for caregivers. A psychoeducational program aimed at three groups was conducted: a) relatives of patients with schizophrenia who received educational program; b) parents or relatives on a previous educational program themselves, and c) control group (not including either parents or patients who received educational programs). The Zarit scale was used to rate burden in the three groups before and after completing the educational program. Application of the program was associated to a significant reduction of burden in the groups where it was provided compared with the control group that did not receive the program, independently of the treatment received for the patients. Evidence suggests that these programs should be included in the therapeutical strategies for patients with schizophrenia.
Bakker, Ton J E M; Duivenvoorden, Hugo J; van der Lee, Jacqueline; Olde Rikkert, Marcel G M; Beekman, Aartjan T F; Ribbe, Miel W
To test the effectiveness of an integrative psychotherapeutic nursing home program (integrative reactivation and rehabilitation [IRR]) to reduce multiple neuropsychiatry symptoms (MNPS) of cognitively impaired patients and caregiver burden (CB). Randomized controlled trial. Psychiatric-skilled nursing home (IRR) and usual care (UC), consisting of different types of nursing home care at home or in an institution. N = 168 (81 IRR and 87 UC). Patients had to meet classification of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition for dementia, amnestic disorders, or other cognitive disorders. Further inclusion criteria: Neuropsychiatric Inventory (NPI) ≥3; Mini-Mental State Examination ≥18 and ≤27; and Barthel Index (BI) ≥5 and ≤19. IRR consisted of a person-oriented integrative psychotherapeutic nursing home program to reduce MNPS of the patient and CB. UC consisted of different types of nursing home care at home or in an institution, mostly emotion oriented. Primary outcome variable was MNPS (number and sum-severity of NPI). Furthermore, burden and competence of caregiver were also measured. T1 (inclusion), T2 (end of treatment), T3 (after 6 months of follow-up). Cohen's d (Cd) was calculated for mean differences (intention to treat). For confounding, repeated measurement modeling (random regression modeling [RRM]) was applied. In the short term from the perspective of the caregiver, IRR showed up to 34% surplus effects on MNPS of the patients; NPI symptoms: 1.31 lower (Cd, -0.53); and NPI sum- severity: 11.16 lower (Cd, -0.53). In follow-up, the effects were sustained. However, from the perspective of the nursing team, these effects were insignificant, although the trend was in the same direction and correlated significantly with the caregiver results over time (at T3: r = 0.48). In addition, IRR showed surplus effects (up to 36%) on burden and competence of caregiver: NPI emotional distress: 3.78 (Cd, -0.44); CB: 17.69 (Cd, -0
Discrepancies Between the Supports Needed for Discharge of Patients With Terminal Cancer to Family Caregivers and What Supports Were Actually Provided in Japan: Assessment of Palliative Care Unit Nurses.
Oosono, Yasufumi; Yokoyama, Kazuhito; Itoh, Hiroaki; Enomoto, Miyuki; Ishiwata, Miki
Even if patients with terminal cancer hope to spend the rest of their lives at home, they are often unable to leave the hospital early due to their family caregivers' anxiety. This study aimed to investigate in Japan the discrepancies between the supports needed by and actually provided by palliative care unit nurses (PCUNs) to the family caregivers for discharge of patients with terminal cancer. In this cross-sectional study, self-administered questionnaires including 6-point Likert-type scales assessing the reasons for difficulties in transition to home-based care were distributed to 1227 PCUNs. Using paired t tests, the differences between the scores on perceived importance and actual supports to family caregivers were examined. The supports actually provided were classified by factor analysis. The relationships between the PCUNs' characteristics and mean scores on the supports in each category were examined using multiple regression analysis. A total of 1023 (83.4%) completed questionnaires were returned. Scores on the actually provided supports for discharge to family caregivers were consistently and significantly lower than the corresponding scores on perceived importance for all 57 items ( P care, receiving necessary training, cooperating with palliative care staff, and cooperating with local service providers were significantly associated with higher levels of actual supply of supports to family caregivers. Our findings suggest that PCUNs need to be encouraged to provide further support to family caregivers for the discharge of patients with terminal cancer.
Missouri Department of Elementary and Secondary Education, 2016
The Missouri State Board of Education and the Department of Elementary and Secondary Education are dedicated to ensuring that all children have access to good schools that prepare them for college and career success. The Missouri School Improvement Program: Support and Intervention Plan takes a differentiated approach to state support based on…
Supporting graduation programs through empirical evidence and leadership promotion. This project will support the scaling up of locally-tested interventions aimed at improving the livelihoods of women and youth in sub-Saharan Africa and Asia. It targets special interventions for people who have fallen through the cracks ...
Gerald, L B
Policymakers in the United States have begun to examine solutions that encourage increased sharing of caregiving responsibilities between government and family. Initiatives in Sweden and the United Kingdom are now in place. Support includes a care leave policy implemented at the federal level, paying salaries to family members when caregiving is a regular job, providing job training to salaried caregivers when their personal caregiving experience ends, community-based programs for caregivers, and allowances to be used for providing care to an elderly person. In the United States, 13 states pay caregivers as Medicaid providers. Policymakers have considered tax incentives and, in 1975, U.S. Senate Bill 1161 was introduced but failed as an attempt to provide cash subsidies to families caring for the elderly. A proposal has been made to expand the Temporary Disability Model to include care of family members of all ages by providing adequate wage replacement to assist caregivers. At present, 34 states provide some type of economic support for caregivers. Research is needed to determine what types of programs are most acceptable and beneficial to caregivers as well as cost effective for government.
Andrés Felipe Ardila Rodríguez
Full Text Available The training strategies developed for the social support program bring deficits in accessibility to the chronic ill patients (EC and the CASSA-UDEC’s caretaker (CASSA-UDEC: Centre for Social Health Care at Universidad de Cundinamarca they do not have time to commute, hindering their legal relationship established by the contract. For this reason, a remote care platform (PTD was developed to support users at CASSA-UDEC improving aspects related to coverage, cost, quality, access and appropriation of information from caregivers and chronic ill patients. The design was based on gerontological constructs identifying features such as modularity, object size, usability, ergonomics, and some others, providing a friendly platform for the user with dynamic, modular and high usability content. The Platform provides a space for interaction and aid, which works as a dynamic entity in the job done by CASSA-UDEC giving support in the development of activities, expanding its coverage, access; all thanks to the benefits offered in a virtual mode.
Mahendran, Rathi; Lim, Haikel A; Tan, Joyce Y S; Ng, Hui Ying; Chua, Joanne; Lim, Siew Eng; Kua, Ee Heok; Griva, Konstadina
Family caregivers of cancer patients often experience an impaired quality of life (QOL) and emotional distress as a result of their caregiving duties, which may potentially influence the quality of care of their care recipients. The COPE (Caregivers of cancer Outpatients' Psycho-Education support group therapy) intervention was developed as a response to the lack of work done among family caregivers of ambulatory cancer patients in Asia. This group intervention comprised four weekly sessions simultaneously targeting psychoeducation, skills training, and supportive therapy. The present study sought to evaluate the pilot COPE intervention using both quantitative and qualitative measures. The Hospital Anxiety and Depression Scale (HADS) was used to measure both depression and anxiety, while the Caregiver QOL - Cancer (CQOLC) measured caregiver QOL. These instruments were measured at baseline pre-intervention, and immediately post-intervention. A waitlist control group design was adopted. A subset of caregivers from the intervention group were invited for a semi-structured interview post-intervention. Quantitative analyses suggest that while QOL remained stable in control group participants, intervention group participants experienced QOL improvements - both in overall QOL and in the specific domain of burden. There were no significant differences in the trajectories of depression and anxiety in both groups. Qualitative analyses suggest that this might have been a result of the intervention not only equipping participants with the relevant coping skills, but also providing a platform for emotional expression and situational reappraisal. The COPE intervention has shown some efficacy in helping family caregivers of cancer patients, but more work is required before this can be implemented. Current Controlled Trials NCT02120183 . Registered 17 April 2014. Retrospectively registered.
Anthony, Katherine P; John Geldhof, G; Mendez-Luck, Carolyn A
Objective (physical) caregiving burden has not often been associated with subjective (emotional) burden among Mexican-origin women caregivers. Yet, many studies show that Latina caregivers suffer from negative psychological outcomes related to caregiving at a higher rate than non-Latino Whites. This study considered whether self-rated intensity of ADL/IADL support explained the relationship between number of care recipient illnesses and caregiver emotional drain among Mexican American women caregivers. Participants included Mexican-origin women caregivers (n = 132) in East Los Angeles, CA who completed a survey that asked culturally appropriate questions about their experiences caring for elderly relatives. Logistic regression models indicated that ADL/IADL supports ranked as difficult were also chosen as causing emotional drain. Mediation models revealed a significant indirect effect of number of care recipient illnesses on caregiver emotional drain for English-speaking caregivers but not for Spanish-speaking caregivers. These results indicate that Mexican-origin women caregivers do experience subjective burden associated with specific objective ADL/IADL supports and suggest that culturally relevant survey design can assist in better understanding the emotional drain among this population. Cultural values should be considered when discussing aspects of care provision with Mexican-origin women caregivers in order to elicit an accurate description of their informal caregiving experiences that may contribute to caregiver burden.
that such caregiving is persistent among non-working caregivers who experienced it for at least a year. Supporting non-working intensive caregivers as a public health issue should be considered a priority.
van Toledo, Annik; Seymour, Fred
Caregiver support is vital in improving outcomes for child sexual abuse victims; however, the disclosure can significantly affect caregivers, thus impacting their ability to meet their children's needs. To maximize the support from caregivers, their own needs following disclosure need to be met. This study investigated the impact of child sexual abuse disclosure and associated needs as identified by caregivers. Sixty needs assessment forms were collected from families who accessed a parenting support pilot program run in New Zealand. These forms were completed by nonoffending caregivers during an assessment session with their counselor and consisted of both open-ended and Likert scale questions focusing on both the needs of the child and the family. Caregivers identified a range of impacts of the disclosure on their children, themselves, and other families members and the related support that may be needed. In particular, caregivers identified that they needed support with child behavior management and with their own coping. The findings suggest that interventions with caregivers following disclosure of child sexual abuse may be a valuable adjunct to therapy provided directly to the child.
Mroz, Emily L; Poulin, Michael J; Grant, Pei C; Depner, Rachel M; Breier, Jennifer; Byrwa, David J; Wright, Scott T
Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction. A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period. An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health. High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.
Caregivers with greatest supporting need based on the relationship between personality, overload and coping strategies related to caregivers of dependent patients from the hospitable area Virgen Macarena of Seville
Mª Angustias Navarro Arquelladas
Full Text Available Objective: Find a relationship between personality, the overhead of caregivers and the coping strategies that develop these to meet the care, allowing us to detect carers need greater supportMaterial and Methods: There has been realized a descriptive study in which there have taken part 23 carer of major dependent persons admitted to the Hospitable Area "Virgen Macarena" of Seville. Demographic and clinical variables have been collected through: general interview, Revised Eysenck Questionnaire of Personality, brief version (EPQ-RA, Coping Strategies Inventory, Zarit Scale Overload.Outcomes: The majority of caregivers are women (86.96% with an average age of 54.9 years old, with studies of basic education. Among them, 56.52% suffer from some kind of disease and 92.86% of these caregivers have no help. Statistical significance was found for extraversion, neuroticism, pretention-conformity, overload and coping strategies. Conclusions: Caregivers, with high scores on the extroversion scale, perform a proper handling of the situation, while those who obtained higher scores on the neuroticism scale, performed improper handling of the situation.
Kim, Sunghee; Shin, Gisoo
The purpose of this study was to develop a simulation-based training program for people living with HIV (PLWH) as peer caregivers who would take care of terminally ill, HIV-infected patients. We used qualitative research methods and standardized patients to explore the meaning of caring for patients as peer caregivers. Study participants included 32 patients registered as PLWH at the South Korea Federation for HIV/AIDS. The meanings of peer caregiving were categorized into four dimensions: physical, psychological, relational, and economic. Our study had benefits in knowledge acquisition for caregivers as well as care recipients, empathy with HIV-infected care recipients, improvement in self-esteem and social participation, and financial self-sufficiency to enable independent living for caregivers. The simulation training program for PLWH peer caregivers for terminally ill HIV-infected patients demonstrated value, for both PLWH caregivers and terminally ill HIV-infected patients in South Korea, to improve the quality of care. Copyright © 2015 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.
Full Text Available Abstract Background Dementia affects the mood of people with dementia but also of their caregivers. In the coming years, the number of people with dementia will increase worldwide and most of them will continue to live in the community as long as possible. Home-based psychosocial interventions reducing the depressive symptoms of both people with dementia and their caregivers in their own home are highly needed. Methods/Design This manuscript describes the design of a Randomised Controlled Trial (RCT of the effects of a home-based exercise and support programme for people with dementia and their caregivers. The aim is to randomly assign 156 dyads (caregiver and dementia diagnosed person to an intervention group or a comparison group. The experimental group receives a home programme in which exercise and support for the people with dementia and their caregivers are combined and integrated. The comparison group receives a minimal intervention. Primary outcomes are physical health (people with dementia and mood (people with dementia and caregivers. In addition, to get more insight in the working components of the intervention and the impact of the intervention on the relationship of the dyads a qualitative sub-study is carried out. Discussion This study aims to contribute to an evidence-based treatment to reduce depressive symptoms among people with dementia and their caregivers independently living in the community. Trial Registration The study has been registered at the Netherlands National Trial Register (NTR, which is connected to the International Clinical Trials Registry Platform of the WHO. Trial number: NTR1802.
A pilot trial of a stress management intervention for primary caregivers of children newly diagnosed with cancer: preliminary evidence that perceived social support moderates the psychosocial benefit of intervention.
Marsland, Anna L; Long, Kristin A; Howe, Chelsea; Thompson, Amanda L; Tersak, Jean; Ewing, Linda J
(1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived stress at both pre-intervention (T1; mean = 24 days post-diagnosis) and post-intervention time points (T2; mean = 165 days post-diagnosis). Enrollment, retention, and satisfaction data support feasibility and acceptability of the intervention. There was no overall significant impact of participation in the intervention on levels of distress at T2. However, T1 social support moderated intervention response, with caregivers who perceived lower T1 support showing greater psychological benefit from the intervention. Primary caregivers with lower levels of perceived social support may benefit from preemptive stress management intervention.
Ruiz-Adame Reina, Manuel; Jiménez Aguilera, Juan de Dios
Alzheimer's is a syndrome mainly suffered by women and the care they need is also mainly provided by other women. The aim of this paper is to describe the profile of users of professional support services and to find out if some socio-demographic factors are linked with those elections. The study was conducted from January to June 2012 thanks to the cooperation of over 41 Alzheimer's Associations in Andalusia, in the south of Spain. A person trained by the main researcher (a social worker or a psychologist) completed the questionnaire during an interview with the caregiver. Seven hundred and seventy-eight questionnaires were analysed. Contrary to previous findings, the use of external services is not infrequent. The most commonly used services are Day Care Centres (22.4%) and Cognitive Workshops (19.2%), but Home Assistance Services are the most frequently used either alone or in combination with the other two (27.5%). A higher level of education increases the probability of choosing a nursing home. The two main factors for looking for external support are non-cohabitation and working outside the home. Among caregivers under 40 years old this is the main profile. Using no services or in low and medium intensity in service hours leads to informal caregivers being the main caregivers. The potential labour market for professional caring is reduced by a crowding-out effect. Employment reduces the chance of being a caregiver.
Full Text Available Background: Fussy eating in young children is very common, with at least 50% of parents reporting having a fussy child. Eating behaviours established early in life tend to remain throughout childhood and into adulthood, so ensuring that children develop healthy eating behaviours from their earliest years is vital. Fussy children often refuse to eat healthy foods, like fruit and vegetables, but favour high-calorie foods instead. Diets low in fruit and vegetables have been linked to a number of preventable health conditions, such as diabetes and cancers, as well as to overweight and obesity. Fussy child eating behaviours can also cause anxiety and stress in caregivers, which can perpetuate the problem. Despite an abundance of available support for introducing complementary foods, practical advice about child feeding once weaning has occurred is lacking. Moreover, caregivers find available resources about feeding young children and promoting healthy eating to be “too basic” and have called for evidence-based, credible resources to help them manage children’s difficult or fussy eating behaviours. Empowering caregivers to effectively manage fussy eating behaviours and improve health in their children will likely prevent these eating behaviours from becoming engrained and reduce the number of children eating unhealthy or limited diets. Aim: To address the lack of child feeding support for caregivers by developing an evidence-based, credible and accessible support resource to promote healthy eating habits in young children and healthy feeding practices in caregivers. Method: Following a review of the literature and consultation with caregivers, the Child Feeding Guide was developed. The Child Feeding Guide is a website and free mobile app which offers information, advice and tools to help caregivers manage fussy eating behaviours. An online format was used to ensure the Child Feeding Guide is accessible and that a diverse range of caregivers can
Chien, Wai Tong; Thompson, David R; Lubman, Dan I; McCann, Terence V
Family interventions for first-episode psychosis (FEP) are an integral component of treatment, with positive effects mainly on patients' mental state and relapse rate. However, comparatively little attention has been paid to the effects of family interventions on caregivers' stress coping and well-being, especially in non-Western countries. We aimed to test the effects of a 5-month clinician-supported problem-solving bibliotherapy (CSPSB) for Chinese family caregivers of people with FEP in improving family burden and carers' problem-solving and caregiving experience, and in reducing psychotic symptoms and duration of re-hospitalizations, compared with those only received usual outpatient family support (UOFS). A randomized controlled trial was conducted across 2 early psychosis clinics in Hong Kong, where there might be inadequate usual family support services for FEP patients. A total of 116 caregivers were randomly selected, and after baseline measurement, randomly assigned to the CSPSB or UOFS. They were also assessed at 1-week and 6- and 12-month post-intervention. Intention-to-treat analyses were applied and indicated that the CSPSB group reported significantly greater improvements in family burden and caregiving experience, and reductions in severity of psychotic symptoms and duration of re-hospitalizations, than the UOFS group at 6- and 12-month follow-up. CSPSB produces moderate long-term benefits to caregivers and FEP patients, and is a low-cost adjunct to UOFS. © The Author 2016. Published by Oxford University Press on behalf of the Maryland Psychiatric Research Center.
Hermann, K.; Boelter, R.; Engeser, P.; Szecsenyi, J.; Campbell, S.M.; Peters-Klimm, F.
BACKGROUND: The care of patients with a life-threatening, progressive and far advanced illness in a home-care setting requires appropriate individual care and requires the active support of family caregivers. General practice teams are usually the primary care givers and first contact and are best
Bosch, Andrea; Crespo, Cecilia
In 1993, Bolivia was selected as a site to pilot an interactive radio instruction (IRI) project that would provide practical support to adult caregivers and children around early childhood development. Through linkages with health and education networks, PIDI (Programa Integral de Desarrollo Infantil) provided young children under the age of six…
Lovell, Brian; Moss, Mark; Wetherell, Mark A.
Elevated psychological distress and concomitant dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis has been implicated as one pathway that links the stress of caregiving with adverse health outcomes. This study assessed whether perceived social support might mitigate the psychological, endocrine and health consequences of caregiver…
Lund, Line; Ross, Lone; Petersen, Morten Aagaard
) and the caregiver's relationship to the patient (spouse/partner, etc.) are related to these experiences. METHODS: In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the 'Cancer Caregiving Tasks, Consequences and Needs...... Questionnaire' (CaTCoN) to 1-3 of their caregivers. RESULTS: A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative...... consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver's relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non...
Ami R. Moore
Full Text Available This study examined the structural constraints to disclosure of children's positive serostatus among informal caregivers to family and nonfamily members in Togo. It drew on two data sources, one qualitative and the other quantitative. Qualitative data showed that caregivers cautiously disclosed child's positive serostatus for fear of being stigmatized and discriminated against as well as to protect the children from being stigmatized. Binary regression analyses revealed that different factors influenced reasons for disclosure of a child's serostatus. For instance, while caregivers' serostatus and number of children significantly influenced disclosure for financial support, disclosure of a child's serostatus for spiritual support was strongly affected by education and religion. These results shed light on factors and reasons for disclosure among caregivers. This knowledge is important because different types of programs and advice should be given to caregivers with specific reason(s for disclosure instead of creating a “one-size-fits all” program for all caregivers.
Gaugler, Joseph E; Reese, Mark; Sauld, Jill
This multiple method pilot evaluation aimed to generate preliminary data on the effectiveness of the Residential Care Transition Module (RCTM). The RCTM is a six-session, 4-month psychosocial intervention designed to help families manage their emotional and psychological distress following residential care placement of a cognitively impaired relative. Seventeen family caregivers of relatives in a nursing home or assisted living memory care unit were randomly assigned to the RCTM treatment condition and 19 family caregivers were assigned to a usual care control group. Caregivers in the treatment condition reported significantly (p families following the placement transition. The findings suggest that the provision of skilled psychosocial support can help families manage emotional distress and crises in the months following a cognitively impaired relative's admission to residential long-term care. Copyright 2015, SLACK Incorporated.
Garvelink, M.M.; Ngangue, P.A.; Adekpedjou, R.; Diouf, N.T.; Goh, L.; Blair, L.; Legare, F.
We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen
Okeke, Bernedette Okwuchukwu
This study examined the relative efficacy of social support seeking (SSS) and self-efficacy building (SEB) in the management of emotional well-being of caregivers of people suffering from HIV/AIDS. It was based at the United States President's Emergency Plan for AIDS Relief (PEPFAR) center in the University College Hospital, Ibadan, Oyo state, being the first and the largest teaching hospital in Nigeria. A 3 × 2 factorial design consisting of treatment and a control group was used. The columns have two levels of gender being male and female caregivers. One-hundred and sixty-five (165) caregivers who were taking care of people that are suffering from HIV/AIDS were purposively selected and randomly assigned to the treatment groups and control. The treatment was carried out for a period of eight weeks. Two null hypotheses were tested, both at .05 levels of significance. Data were collected with the use of standardized intruments rating scale; social support scale, general self-efficacy scale and emotional well-being scale. ANCOVA was used to establish significant treatment effects with the pretest as covariate. Even though SSS and SEB were both found to be effective in enhancing the emotional well-being of informal caregivers in this study when compared to the controls, SSS was significantly more effective than SEB in achieving this goal. Since the HIV/AIDS patients cannot be adequately cared for in the hospital settings due to severe shortages of material, personnel and time, serious efforts should be made by the three levels of the health care system viz: the primary, secondary and tertiary health care systems, to encourage the employment of the psychological management of caregivers of people suffering from HIV/AIDS. Also, the psychologists, clinical psychologists and the significant others should be encouraged to employ this psychological management in the care of HIV/AIDS informal caregivers.
Ellis-Smith, Clare; Evans, Catherine J; Murtagh, Fliss Em; Henson, Lesley A; Firth, Alice M; Higginson, Irene J; Daveson, Barbara A
Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale-Symptom and Integrated Palliative care Outcome Scale. To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia. A multi-method qualitative study consisting of focus groups, semi-structured interviews and cognitive interviews. Three residential long-term care settings in London, UK. Focus group and semi-structured interview participants included caregiver staff, family, general practitioners and district nurses. Caregiver staff were sampled purposively for cognitive interviews. A total of 26 respondents participated in the focus groups ( n = 21) or semi-structured interviews ( n = 5) and 10 caregiver staff completed cognitive interviews. Additional symptoms and problems included agitation, wandering, sleep problems, communication problems and diarrhoea. Refinements or lay terms were required to improve comprehension and consistency of item response for nausea, drowsiness, delusions/hallucinations, agitation, loss of interest, communication problems and interaction. A video presentation was required to support comprehension of instructions and assessment of verbally compromised residents. Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia. It is suitable for caregiver staff without professional training as it has been refined and tailored to maximise caregiver expertise, ready for
Full Text Available The basic limitation emerging from practising eXtreme Programming methodology is theconstraint of close physical proximity between the members of the collaborating team including customer. This became the main idea behind research on XP supporting environmentfor geographically distributed teams. This work presents basic assumptions, elaborated architecture and selected implementation issues for the system of this type. Deliberations aresupplied with the initial results of the veriﬁcation of its usability based on the users tests.
Blucker, Ryan T; Elliott, Timothy R; Warren, Robert H; Warren, Ann Marie
Although much is known about the risks to health and well-being that occur among family caregivers of children with disability, little is known about the unique group of caregivers of children with severe neurodisabilities who require varying degrees of respiratory care including ventilator support. This present study examined the psychological adjustment of caregivers in these situations, and tested the prediction that caregiver coping and problem-solving styles would be predictive of their physical and emotional health. Hierarchical regression analyses revealed that demographic characteristics and the severity of pulmonary condition were unrelated to caregiver adjustment. A coping style characterized by developing relationships, pursuing activities that promote self-worth and individuality, and a lower negative orientation toward solving problems were significantly predictive of caregiver distress. These data indicate that caregiver adjustment in these situations is influenced by cognitive-behavioral characteristics that could be addressed in educational and therapeutic programs provided in the clinic and in the community.
Full Text Available This study aimed to examine the relationships between caregiving stress, depression, and self-esteem of family caregivers of an adult person with a disability and to identify their effects on their caregiving burden. The study was performed with 108 care providers of adult people with a disability who visited hospital rehabilitation centers. Caregiving stress showed a significant positive correlation with depression and with economic and psychological stress, and it showed a significant negative correlation with self-esteem. When the care provider was aged, female, and without a job and the caregiving cost and time were higher, the caregiving stress was high. When the care provider was female and had a lower income, the depression index was high. When the person with a disability was male and in the forties and the level of disability was higher, the caregiving stress was high. When the disability was related to spinal cord damage, the care provider’s depression index was the highest. To reduce caregiving stress and depression in the family caregivers and to improve their self-esteem, continuous support and help from specialists are necessary. Additionally, a variety of intervention programs need to be designed to motivate them to participate regularly at the community level.
Ireland, Jackie; Simpson, John
Considers varying definitions of self-supporting community services programs, revenue sources for self-supporting programs, implications associated with varying interpretations and revenue sources, and practical insights about program management and service area factors. (DMM)
Luby, Joan; Rogers, Cynthia
Advances in brain imaging methods and technology over the last 2 decades have opened an unprecedented window into the understanding of the structure and function of the human brain. In this article, the authors describe their investigation of the relationship between maternal support, observed during the preschool period, and the size of key brain…
Chou, Hsin-Kai; Yan, Sui-Hing; Lin, I-Chun; Tsai, Ming-Tsu; Chen, Chu-Chieh; Woung, Lin-Chung
As a progressive degenerative illness, dementia can reveal itself through a variety of symptoms such as intellectual deterioration, loss of recent memory, loss of cognitive ability, and psychological and behavioral problems. The telecare medical support system (TMSS) has been a part of dementia care in many countries for many years. Although worth considering, the TMSS model is difficult to directly implement in Taiwan because of cultural and social issues. This study explores the ease of use and usefulness of TMSS from the perspective of primary caregivers and assesses the benefits of TMSS in home dementia care. We used a qualitative research method to explore the experience and perceptions of 30 primary caregivers who each used TMSS for 6 months in dementia care. Data were collected using 1-hour in-depth interviews. Four senior nurses conducted the content analysis. Approximately two thirds (63.3%) of the participants were primary caregivers of patients with Alzheimer's disease in the mild to medium stage of their illness. After using TMSS for the 6-month study period, participants held generally positive views of its usefulness and ease of use. Participants generally appreciated the ability of TMSS to self-diagnose care recipient conditions; provide reminders, care, and emotional support; and help stabilize the care recipient's condition and emotions. We showed TMSS as an effective tool that helps reduce primary caregiver isolation and uncertainty and provides round-the-clock care management and safety checks using advanced technology and a professional care team. TMSS can effectively enhance dementia care.
Piske, Fernanda; Azevedo, Larissa Antonella; Marcon, Claudete; Oliveira, Lecila Duarte Barbosa
Abstract: This article reports the work of a psychological intervention group. This group is focused in dealing with families during child hospitalization time in order to provide a reflection on their behavior. Also, a better understanding how to cope with anguish and fear during child illness. The therapeutic factors related to support groups were identified. This qualitative study was exploratory nature. All the therapeutic factors were identified and analyzed from the subjects’ report. Th...
Perlick, Deborah A; Berk, Lesley; Kaczynski, Richard; Gonzalez, Jodi; Link, Bruce; Dixon, Lisa; Grier, Savannah; Miklowitz, David J
Over one-third of caregivers of people with bipolar disorder report clinically significant levels of depressive symptoms. This study examined the causal relationship between depression and caregiver burden in a large sample of caregivers of adult patients with bipolar disorder. Participants were 500 primary caregivers of persons with bipolar disorder enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD).This study evaluates the strength and direction of the associations between caregiver burden and depressive symptoms at baseline and at six- and 12-month follow-up using cross-lagged panel analyses, controlling for the clinical status of patients and sociodemographic variables. Higher levels of overall caregiver burden at baseline were associated with increased levels of depressive symptoms among caregivers at follow-up (F = 8.70, df = 1,290, p < 0.001), after controlling for baseline caregiver depression, gender, race, age, social support, and patients' clinical status. By contrast, caregiver depression at baseline was not significantly associated with caregiver burden at follow-up (F = 1.65, p = 0.20). Caregiver burden is a stronger predictor of caregiver depressive symptoms over time than the reverse. Interventions that help alleviate caregiver burden may decrease depressive symptoms. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
Dam, Alieske E H; de Vugt, Marjolein E; van Boxtel, Martin P J; Verhey, Frans R J
Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics. A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T 0 ) and at 8-week (T 1 ), 16-week (T 2 ) and 42-week follow up (T 3 ). The 16-week follow-up assessment (T 2 ) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention. Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care. Dutch trial register, NTR6131 . Registered on 20 October 2016.
The program supports research in three areas: prevention or treatment of acute or chronic symptoms and morbidities related to cancer, its treatment and caregiving (symptom management research); effects on quality of life from cancer, its treatment and caregiving (quality of life research); and end-of-life psychosocial issues, caregiving and treatment strategies (end-of-life research). |
Slev, Vina N; Pasman, H Roeline W; Eeltink, Corien M; van Uden-Kraan, Cornelia F; Verdonck-de Leeuw, Irma M; Francke, Anneke L
Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and nurses' experiences with eHealth in this context. Six online focus groups were organized, with a total of 45 Dutch nurses with different educational levels and working in different care settings. Nurses were asked how they support patients and informal caregivers facing advanced cancer in managing physical and psychosocial problems in their daily life. Questions were also asked regarding the nurses' experiences with eHealth. Transcripts of the online focus group discussions were analyzed qualitatively following the principles of thematic analysis. The main themes derived from the analyses were ordered according to the elements in the 5 A's Behavior Change Model. Within the scope of self-management support, nurses reported that they discuss the background, personal situation, wishes, and needs of advanced cancer patients ('Assess' in the 5 A's model), and they provide information about cancer and specifically the advanced type ('Advise'). However, nurses hardly give any advice on how patients can manage physical and psychological problems themselves and/or pay any attention to collaborative goal-setting ('Agree'). Neither do they explain how follow-up can be arranged ('Arrange'). In addition, they do not appear to pay much attention to self-management support for informal caregivers. Nurses' attitudes towards eHealth within the scope of self-management support are positive. They see many advantages, such as allowing advanced cancer patients to stay in charge of their own care and lives. However, nurses also explicitly stressed that eHealth can never be a substitute for personal contact between nurses and patients. Nurses value self-management support and eHealth for advanced cancer
Full Text Available The Ambient Assisted Living (AAL area is in constant evolution, providing new technologies to users and enhancing the level of security and comfort that is ensured by house platforms. The Ambient Assisted Living for All (AAL4ALL project aims to develop a new AAL concept, supported on a unified ecosystem and certification process that enables a heterogeneous environment. The concepts of Intelligent Environments, Ambient Intelligence, and the foundations of the Ambient Assisted Living are all presented in the framework of this project. In this work, we consider a specific platform developed in the scope of AAL4ALL, called UserAccess. The architecture of the platform and its role within the overall AAL4ALL concept, the implementation of the platform, and the available interfaces are presented. In addition, its feasibility is validated through a series of tests.
Heinrich, Steffen; Uribe, Franziska Laporte; Wübbeler, Markus; Hoffmann, Wolfgang; Roes, Martina
In general, most people with dementia living in the community are served by family caregivers at home. A similar situation is found in Germany. One primary goal of dementia care networks is to provide information on support services available to these caregiving relatives of people with dementia via knowledge management. The evaluation of knowledge management tools and processes for dementia care networks is relevant to their performance in successfully achieving information goals. One goal of this paper was the analysis of knowledge evaluation in dementia care networks, including potential barriers and facilitators, across Germany within the DemNet-D study. Additionally, the impact of highly formalized and less formalized knowledge management performed in dementia care networks was analyzed relative to family caregivers' feelings of being informed about dementia support services. Qualitative data were collected through interviews with and semi-standardized questionnaires administered to key persons from 13 dementia care networks between 2013 and 2014. Quantitative data were collected using standardized questionnaires. A structured content analysis and a mixed-methods analysis were conducted. The analyses indicated that the development of knowledge goals is important for a systematic knowledge evaluation process. Feedback from family caregivers was found to be beneficial for the target-oriented evaluation of dementia care network services. Surveys and special conferences, such as quality circles, were used in certain networks to solicit this feedback. Limited resources can hinder the development of formalized knowledge evaluation processes. More formalized knowledge management processes in dementia care networks can lead to a higher level of knowledge among family caregivers. The studied tools, processes and potential barriers related to knowledge evaluation contribute to the development and optimization of knowledge evaluation strategies for use in dementia care
Moulin, Florence; Wrobel, Jérémy; Batrancourt, Bénédicte; Plichart, Matthieu; Rigaud, Anne-Sophie
Background Web-based programs have been developed for informal caregivers of people with Alzheimer’s disease (PWAD). However, these programs can prove difficult to adopt, especially for older people, who are less familiar with the Internet than other populations. Despite the fundamental role of usability testing in promoting caregivers’ correct use and adoption of these programs, to our knowledge, this is the first study describing this process before evaluating a program for caregivers of PWAD in a randomized clinical trial. Objective The objective of the study was to describe the development process of a fully automated Web-based program for caregivers of PWAD, aiming to reduce caregivers’ stress, and based on the user-centered design approach. Methods There were 49 participants (12 health care professionals, 6 caregivers, and 31 healthy older adults) that were involved in a double iterative design allowing for the adaptation of program content and for the enhancement of website usability. This process included three component parts: (1) project team workshops, (2) a proof of concept, and (3) two usability tests. The usability tests were based on a mixed methodology using behavioral analysis, semistructured interviews, and a usability questionnaire. Results The user-centered design approach provided valuable guidelines to adapt the content and design of the program, and to improve website usability. The professionals, caregivers (mainly spouses), and older adults considered that our project met the needs of isolated caregivers. Participants underlined that contact between caregivers would be desirable. During usability observations, the mistakes of users were also due to ergonomics issues from Internet browsers and computer interfaces. Moreover, negative self-stereotyping was evidenced, when comparing interviews and results of behavioral analysis. Conclusions Face-to-face psycho-educational programs may be used as a basis for Web-based programs
The Municipal Recycling Support Program stems from the Ontario Ministry of the Environment's policies and programs begun in 1980 aimed at encouraging the development of source separation projects in Ontario. To qualify for financial assistance, municipalities must play a central role in the implementation and ongoing development of recycling; applications will be supported only if there is adequate and reasonable commitment from markets for recovered materials; recycling systems must operate within the framework of a complete waste management system in which cost effectiveness is an important factor; multi-material projects are encouraged as much as possible; and the Ministry will share the costs of projects with the municipalities. The Ministry provides grants for up to 5 years per project to cover the net operating cost of a project up to a specified maximum percentage of eligible gross operating expenses. This manual provides guidelines for applying for such funding, including definitions of eligibility for operating and capital costs, the use of household bins, and guidelines for promotion and advertising, education, demonstration, and feasibility studies.
Santens, Tara; Claes, Laurence; Diamond, Guy S; Bosmans, Guy
Depressive symptoms and self-harm, i.e. non-suicidal self-injury and suicidal behaviors, are highly prevalent in youngsters involved in Child Welfare System (CWS) services. Little research investigates, however, why these CWS youngsters are at risk. We explored whether trust in caregiver support and communication about experiences with primary caregivers, are associated with CWS youngsters' depressive symptoms and/or self-harm. An anonymous online survey of 271 CWS youngsters (10-21 years of age, 57.2% female) was used to assess trust and communication, and depressive symptoms/self-harm. Results showed significant negative associations between self-reported trust in maternal and paternal support, and depressive symptoms/self-harm. Communication about experiences with one's biological mother mediated the relationship between trust in maternal support and depressive symptoms/self-harm. Furthermore, the presence of an additional trustworthy caregiver buffered the impact of low trust in maternal or paternal support on depressive symptoms/self-harm. Implications for interventions targeting CWS youngsters' depressive symptoms and self-harm are discussed. Copyright © 2018 Elsevier Ltd. All rights reserved.
José Manuel Perea-Baena
Full Text Available Los cuidados parentales de hijos con trastornos mentales producen estrés y dificultades de afrontamiento en las familias. Muchos estudios han asociado la carga familiar con factores como el apoyo social y dificultades del paciente como problemas de conducta o gravedad del Trastorno. Se realizó un análisis transversal para averiguar la influencia del apoyo social, apoyo familiar y gravedad del trastorno en la sobrecarga de la persona cuidadora. De un total de 96 pacientes, han participado 83 madres y 55 padres. Los resultados muestran mayor sobrecarga en las madres, una relación negativa entre apoyo y sobrecarga y una influencia de la gravedad del trastorno en la sobrecarga.Parental care for a child with mental disorder generates stress and coping difficult. Many studies have associated burden's caregiver with factors such social support and child factor such child behaviour problems and severity of disability. This study employed a cross-sectional design to verify the influence of the social support, family support and severity of disorder in the caregiver's burden. Of a whole of 96 patients, 83 mothers and 55 parents have taken part. Results showed major burden in the mother, a negative relation between social support and burden and an influence of the severity of disorder in caregiver's burden.
Fabiola Yonte Huete
Full Text Available Objectives: The main objective is to determine the degree of burden in the main caregivers of dependent patients, to analyse the profile of informal caregivers and dependent patients. Their claims and help received with caring, the influence of mental deteriorate and duration of care giving regarding the burden of caregivers.Methods: Descriptive cross-sectional observational study amongst 50 caregivers and dependents. We used descriptive statistics and correlational studies. Results: 86 % of caregivers were women, middle aged, son/daughter of the dependent, married, with basic studies, no work outside the home, the average time in the role of caregiver was 16,96 hours a day and 2,1 free hours a day. 64 % of them received family support and 68 % wish to receive economic aid. It was found that for 38 % of the caregivers there was no burden at all, 34 % of them had a minimum burden and 28 % a greater burden.Conclusion: There are some caregivers with moderate or great burden. Our caregiver wishes to receive economic help. Our research shows that the decrease of mental health and the years of evolution do not have a significant statistically influence on caregivers. It is necessary prioritize the interventions and its recipients, provide solutions for caregivers with a greater burden, trying to keep away “caregiver syndrome”.
Longacre, Margaret L; Valdmanis, Vivian G; Handorf, Elizabeth A; Fang, Carolyn Y
With the growing aging population and reliance on informal caregivers in the United States, many individuals will take on the role of caregiver as an adult. We examined whether informal caregivers experience work interference or a change in work status (i.e., retiring/quitting) due to caregiving. We also explored whether experiencing work interference or a change in work status was associated with greater emotional stress. This secondary analysis is drawn from the Fifth National Survey of Older Americans Act (OAA) program participants, which included 1,793 family caregivers. The present analysis is on caregivers of working age (18-64 years) providing care to another adult, which included 922 caregivers. Ordinal logit models were used to assess associations between experiencing work interference or a change in work status and emotional stress. Study weights were applied for all analyses. At the time of the survey, more than half (52.9%) of caregivers were employed full- or part-time. Among nonworking caregivers (i.e., not working or retired) at the time of the survey, 39.8% responded that they had quit or retired early due to caregiving demands. Among employed caregivers, 52.4% reported that informal caregiving had interfered with their employment. Importantly, those respondents who reported work interference or a change in work status were more likely to report higher levels of emotional stress associated with caregiving demands. These findings suggest the need to further explore work among informal caregivers and associations with emotional stress, as well as consider work-based policy approaches, organizational and/or societal, to support informal caregivers.
Kim, Youngmee; Kashy, Deborah A; Spillers, Rachel L; Evans, Tekla V
Caregivers' quality of life (QOL) may be maximized when the caregivers' needs in the context of cancer care are met. Therefore, determining what needs are not being satisfied for family caregivers should be the first step in the development of programs designed to enhance caregivers' QOL. The 28-item Needs Assessment of Family Caregivers-Cancer (NAFC-C) scale was developed and validated with caregivers at three different survivorship phases: at 2 months (n=162), 2 years (n=896), and 5 years (n=608) post-diagnosis. The NAFC-C helped to identify caregivers whose needs were less likely to be met, based on their age and ethnicity. Furthermore, the extent to which caregivers' psychosocial needs were not being met was a consistent and strong predictor of poor mental health across all phases of survivorship, beyond the effects of a host of demographic characteristics. Findings suggest that interventions designed to help caregivers manage their own emotional distress as well as the survivors' distress, find meaning in the cancer caregiving experience, and foster supportive familial relationship will benefit caregivers by improving their QOL, not only during the time of diagnosis and treatment but years after. (c) 2009 John Wiley & Sons, Ltd.
Auer, Stefanie R; Span, Edith; Reisberg, Barry
Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future. © The Author(s) 2013.
Parker Oliver, Debra; Demiris, George; Washington, Karla; Kruse, Robin L; Petroski, Greg
Untrained family caregivers struggle with complicated medical management regimens for hospice patients. An intervention was tested to improve caregiver's perception of pain management and patient's pain. The intervention was tested with a 2-group (usual care vs intervention) randomized controlled trial using parallel mixed-methods analysis of 446 caregivers in 3 Midwestern hospice programs representing rural and urban settings. Web conferencing or telephones were used to connect caregivers with the hospice care team during care plan meetings. Caregiver's perceptions of pain management were the primary outcome. Secondary outcomes included caregiver quality of life, patient's pain, and anxiety. Video recordings, field notes, and caregiver and staff interviews provided qualitative data. The overall perception of pain management was not changed by the participation in hospice team meetings. Perceptions of fatalism improved for intervention participants, and the intervention participants perceived their patients' pain was better controlled than those in the control group. The intervention was found to be feasible to deliver in rural areas. Caregiver's anxiety and patient's pain were correlated ( r = .18; P = .003), and subanalysis indicated that caregivers of patients with cancer may benefit more from the intervention than other hospice caregivers. Qualitative analyses provided understanding of caregiver's perceptions of pain, cost, and facilitators and barriers to routine involvement of family in care plan meetings. Limitations and Conclusion: The hospice philosophy is supportive of caregiver involvement in care planning, and technology makes this feasible; the intervention needs modification to become translational as well as additional measurement to assess effectiveness. Caregiver education and emotional support should occur outside the meeting, and a strong leader should facilitate the meeting to control efficiency. Finally, the intervention may benefit caregivers
Dam, Alieske E H; Boots, Lizzy M M; van Boxtel, Martin P J; Verhey, Frans R J; de Vugt, Marjolein E
Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks. Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes. Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance. Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.
Haverhals, Leah M; Manheim, Chelsea E; Gilman, Carrie V; Jones, Jacqueline; Levy, Cari
The Veteran's Health Administration's Medical Foster Home program offers a unique long-term care option for veterans who require nursing-home- or assisted-living-level care. Veterans in a medical foster home reside with community-based caregivers who provide 24-hr-a-day care and monitoring. The veterans often remain in the medical foster home until end of life. Support and oversight is provided to the caregiver from the Veteran's Health Administration's community-based medical team. This qualitative descriptive study is based on secondary analysis of interviews with 20 medical foster home caregivers from 7 programs across the United States. The study's research aims are to describe and explain (a) the type of care backgrounds and skills these caregivers possess, (b) caregivers' primary motivations to open their homes to veterans who often have complex medical and social needs, and (c) how caregivers function in their role as primary caregiver for veterans. Findings indicated that caregivers interviewed had worked in long-term care settings and/or cared for family members. A strong desire to serve veterans was a primary motivation for caregivers, rather than financial gain. The caregivers' long-term care skills aided them in building and sustaining the unique medical foster home family-like community.
Goodman, Petra; Turner, Annette; Agazio, Janice; Throop, Meryia; Padden, Diane; Greiner, Shawna; Hillier, Shannon L
Military mothers and their children cope with unique issues when mothers are deployed. In this article, we present mothers' perspectives on how military resources affected them, their children, and their caregivers during deployment. Mothers described beneficial features of military programs such as family readiness groups and behavioral health care, processes such as unit support, and policies on length and timing of deployments. Aspects that were not supportive included inflexibility in family care plans, using personal leave time and funds for transporting children, denial of release to resolve caretaker issues, and limited time for reintegration. We offer recommendations for enhanced support to these families that the military could provide. Reprint & Copyright © 2013 Association of Military Surgeons of the U.S.
Ceres Eloah de Lucena Ferretti
Full Text Available Abstract Many patients with dementia live within the community supported by their family and friends. Majority of patient caregivers suffer from high levels of stress. Methods: A quasi-experimental study, which compared the effects of nursing interventions on behavior disorders in both patients with moderate to severe dementia and their caregivers, followed over 18 months. The assessments were performed at the outpatient clinic of the Federal University of São Paulo and again at patients' homes with their primary caregiver, after informed consent form. Measurements were performed at baseline and after 18 months (pre and post-test. The instruments used were: The CDR, NPI and NPI-D; Katz Index and FAQ. Simultaneously, caregivers were enrolled onto the Dementia Education Program. Results: The final sample was composed of 31 subjects, having a mean age of 77.4 y.o. (±8 SD. Nursing interventions were effective in reducing some of the behavioral disturbances (Z= -3.1; p=0.002, such as Aggression (Z= -3.7; p<0.001 and anxiety (Z= -2.3; p=0.023. Caregiver distress also reduced upon interventions (Z= -2.2; p=0.030. Conclusion: Our results indicate nursing interventions may be effective in reducing the frequency and severity of behavioral disorders and subjective burden among caregivers. Education Programs can improve caregiver burden through conveying information on difficulties related to the disease and how to deal with them.
Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.
Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…
... eligible homeless veterans, such as the Health Care for Homeless Veterans (HCHV) Program, the Grant and Per... AFFAIRS 38 CFR Part 62 RIN 2900-AN53 Supportive Services for Veteran Families Program AGENCY: Department... concerning the Supportive Services for Veteran Families Program (SSVF Program) of the Department of Veterans...
Putting the "T" in STEM (science, technology, engineering, and math) education begins by reviewing guidelines from early childhood organizations about technology use by children birth through 8 years old, and identifying the implications for children from birth to 3 and their parents, families, and caregivers. What is known and what…
Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael
Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…
Full Text Available This qualitative research study used a phenomenological lens to examine the perspectives of familial caregivers in the Laikipia Region of Kenya. Through the narrative of the caregivers’ lived experience, key factors identified included social supports, rewards of caregiving, and lessons to others. Overarching basic themes centered on food insecurity, disease, rejection, lack of support, education challenges, inadequate land ownership, the absence of male support and neglect issues. These unique perspectives can contribute towards our understanding of policy and programming needs for orphaned children and familial caregivers in rural Kenya and within the rural areas of the East African context.
Dragutinović Dijana B.
Full Text Available On December 20, 2000 Yugoslavia was readmitted to the IMF, which led to the approval of emergency post conflict assistance. On June 11, 2001, the Executive Board of the IMF approved a Stand-by arrangement. On May 13, 2002 the Executive Board of the IMF approved an Extended Arrangement. In general the IMF supported programs are focused on the following: (I restrained fiscal policy; (II consistent monetary and exchange rate policies; (III wage and price policies; and (IV structural policy. In the period from 2001 to 2003, considerable progress was made in the creation of an appropriate institutional environment for the operation of a market economy. Serbia & Montenegro is growing at rate that are about twice as large as EU growth rate; however, after a two year period of recovery and accelerated reforms 2003 has seen a slowing in the rate of economic growth. Although inflation was relatively low in 2003, large imbalances continued: (I the fiscal deficit amounted to 4.2 percent of GDP on a cash basis; (II. the current account deficit was 12.5 percent of GDP. Having in mind two potential causes of macroeconomic instability, discussions between the IMF and country authorities focused on the need to tighten fiscal policy to reduce the pace of domestic demand and improve the current account deficit in the short run.
Prick, Anna-Eva; de Lange, Jacomine; van 't Leven, Netta; Pot, Anne Margriet
A randomized controlled trial of a multicomponent dyadic intervention (a translated and adapted version of an intervention that has been shown to be effective for people with dementia in the USA) was performed. The exercise and support intervention was intended to reduce depressive symptoms of people with dementia and their caregivers. The purpose of this process evaluation is to create in-depth insight into the delivery of the intervention and the effect analysis, to prevent drawing inappropriate conclusions on the efficacy or effectiveness of the intervention, and to formulate recommendations for future studies on complex geriatric interventions. Qualitative and quantitative data were collected. The process evaluation was performed according to the model presented by Reelick and colleagues, which encompasses the following three process components: (1) success rate of recruitment and quality of the study population; (2) the quality of execution of the complex intervention; and (3) the process of acquisition of the data. The study design met high research standards and the intervention was carefully delivered. Evaluation of the study population quality revealed a profound recruitment process resulting in a reasonable sample size. Attrition rate during follow-up was acceptable. With regard to the evaluation of the intervention quality, most interviewed participants experienced benefits of the intervention. Attendance at the home visits was high and attrition to homework was moderate. Evaluation of the data acquisition showed the positive value of the use of a mixed design; qualitative analysis of the intervention revealed outcomes not measured in the quantitative analysis. The process evaluation revealed a carefully and soundly performed study. The mixed design contributed to valuable insights. However, there were some restrictions worth considering. The intervention components may have a different feasibility by moderate attrition to homework and some negative
Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang
To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.
Wampler (1985) cite at least six specific empirical issues that need to be addressed prior to implementation of marital and premarital enrichment programs...sought and assessed in marital and premarital enrichment programs are overall program satisfaction; overall marital satisfaction and adjustment...considered the treatment of choice, especially with the inclusion of communication training as a component of these sex therapy programs. Family therapies are
Heinrich, S; Laporte Uribe, F; Roes, M; Hoffmann, W; Thyrian, J R; Wolf-Ostermann, K; Holle, B
Stakeholders involved in community dementia support services often work on their own and without coordination with other services. These circumstances can result in a lack of information and support for people with dementia and their family caregivers at home. To increase the coordination between existing support services, so-called 'Dementia Care Networks' (DCNs) have been established. Most of the tasks that are performed in DCNs are based on communication strategies. Therefore, knowledge management (KM) is a key process in these networks. However, few studies have focused on this topic. This study attempted to evaluate KM strategies in DCNs across Germany as part of the DemNet-D study. A qualitative interview study design was used. Qualitative data were collected during single and group interviews with key persons associated with thirteen DCNs. Interviews were audiotaped and transcribed, and a structured content analysis was conducted. The framework for the analysis was derived from a KM model. Information dissemination strategies for people with dementia and their informal caregivers based on actively established contacts appear to be more successful than passive strategies. General practitioners often play a key role as external gatekeepers in initiating contact between a network and a person affected by dementia. In this context, case managers can help integrate external stakeholders, such as general practitioners or pharmacists, into DCNs using different KM strategies. The systematic development of common objectives under an agency-neutral leadership seems to be an important aspect of successful KM within DCNs. The findings reported here can help DCNs optimize their KM strategies for generating tailored information and support services for people with dementia living at home and their family caregivers. In particular, the identified potential knowledge distribution barriers and facilitators will be of practical use to DCN stakeholders. Copyright © 2015 The
Northouse, Laurel; Schafenacker, Ann; Barr, Kathryn L C; Katapodi, Maria; Yoon, Hyojin; Brittain, Kelly; Song, Lixin; Ronis, David L; An, Larry
Most programs addressing psychosocial concerns of cancer survivors are in-person programs that are expensive to deliver, have limited availability, and seldom deal with caregivers' concerns. This study examined the feasibility of translating an efficacious nurse-delivered program (FOCUS Program) for patients and their caregivers to a tailored, dyadic Web-based format. Specific aims were to (1) test the preliminary effects of the Web-based intervention on patient and caregiver outcomes, (2) examine participants' program satisfaction, and (3) determine the feasibility of using a Web-based delivery format. A phase 2 feasibility study was conducted with cancer patients (lung, breast, colorectal, prostate) and their family caregivers (N = 38 dyads). The Web-based intervention provided information and support tailored to the unique characteristics of each patient, caregiver, and their dyadic relationship. Primary outcomes were emotional distress and quality of life. Secondary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included descriptive statistics and repeated-measures analysis of variance. Dyads had a significant decrease in emotional distress, increase in quality of life, and perceived more benefits of illness/caregiving. Caregivers also had significant improvement in self-efficacy. There were no changes in communication. Participants were satisfied with program usability, but recommended additional content. It was possible to translate a clinician-delivered program to a Web-based format that was easy to use and had positive effects on dyadic outcomes. The Web-based program is a promising way to provide psychosocial care to more patients and caregivers using fewer personnel. It needs further testing in a larger randomized clinical trial.
Corazza, Danilla I; Pedroso, Renata V; Andreatto, Carla A A; Scarpari, Lais; Garuffi, Marcelo; Costa, José L R; Santos-Galduróz, Ruth F
The responsibility of giving care to patients with Alzheimer's disease (AD) may result in health changes in the older caregiver. It is important to explore the factors which influence the presence of care burden and to create strategies to face this condition. In this context, the aims of present study were to investigate the relationships between psychoneuroimmunological parameters and determine the predictors to burden in older caregivers of patients with AD. A total of 30 AD older caregivers participating in the «Cognitive and Functional Kinesiotherapy Program in Elderly with Alzheimer's disease«(PRO-CDA)», de Rio Claro, SP-Brazil, were submitted to an assessment protocol to evaluate the psychoneuroimmunological parameters. A descriptive statistical analysis, Pearson correlation and multiple linear regressions were performed. The mean age of caregivers was 71.3 (±9.3), and predominantly are first-grade relatives. The caregiver burden was associated with depressive symptoms (r=0.60, Pdepressive symptoms and neuropsychiatric disturbances as predictors of caregiver burden. Caregiver burden is associated with, and influenced by parameters related to the caregiver psychological suffering and to characteristics inherent to AD. Thus, it is important to find strategies and implement non-pharmacological programs to provide support to older caregivers, and to assist in the treatment of patients with AD, in order to improve the integral health of this population. Copyright © 2013 SEGG. Published by Elsevier Espana. All rights reserved.
Barlow, Constance A.; Waegemakers Schiff, Jeannette; Chugh, Urmil; Rawlinson, Dixie; Hides, Elizabeth; Leith, Judy
Peer support, a cornerstone in recovery programs for mental illness and addiction, has not been widely applied to service programs for survivors of suicide. In 2004-2006 Canadian Mental Health Association Suicide Services in Calgary, Alberta, introduced the Peer Support Program for adults, an adjunct to conventional individual and group…
Lang, H. R.; Scarfe, D. R.
This study examines a specific Indian/Metis teacher education program which uses the group as a support system--the Saskatchewan Urban Native Teacher Education Program (SUNTEP) at Regina. SUNTEP is a part of the Elementary Teacher Education Program of the Univesity of Regina. This paper: (1) discusses the support services and systems provided as a…
Children's social, emotional, and physical health; their developmental trajectory; and the neurocircuits that are being created and reinforced in their developing brains are all directly influenced by their relationships during early childhood. The stresses associated with contemporary American life can challenge families' abilities to promote successful developmental outcomes and emotional health for their children. Pediatricians are positioned to serve as partners with families and other community providers in supporting the well-being of children and their families. The structure and support of families involve forces that are often outside the agenda of the usual pediatric health supervision visits. Pediatricians must ensure that their medical home efforts promote a holistically healthy family environment for all children. This statement recommends opportunities for pediatricians to develop their expertise in assessing the strengths and stresses in families, in counseling families about strategies and resources, and in collaborating with others in their communities to support family relationships.
Zucchella, Chiara; Di Santis, Massimo; Ciccone, Biagio; Pelella, Massimiliano; Scappaticci, Marina; Badalassi, Giovanna; Lavezzi, Susanna; Bartolo, Michelangelo
Preliminary evidences showed that telemedicine may allow a reduction of costs and an enhancement of patients' satisfaction and quality of life (QoL), with the same effectiveness of conventional methods of healthcare delivery. Literature is quite absent in relation to the use of telemedicine for patients with disorders of consciousness (DoC) whose management is delegated almost entirely to the family. In order to promote an alternative setting to manage persons affected by DoC, also supporting their families, a pilot project was designed to test the feasibility of home-care assistance based on a system of telemonitoring. In total, 11 patients were supported by a telemonitoring system via a workstation installed at the patients' homes. All patients underwent a clinical and functional evaluation at enrolment, after two months, after six months and at the end of the project, after 12 months by means of clinical scales (Glasgow Coma Scale, Rancho Los Amigos Levels of Cognitive Functioning Scale, Glasgow Outcome Scale, Disability Rating Scale), while the World Health Organization (WHO) QoL, the Hamilton Depression Rating Scale, the Hamilton Anxiety Rating Scale and a satisfaction score were completed by caregivers. Patients' scores at the clinical scales did not show statistically significant differences from T0 to T3. A trend toward the improvement of caregivers' QoL, anxiety and depression, as well as a high degree of satisfaction with regard to the intervention, were reported. The economic evaluation showed an average cost/day for a patient of about €70. Preliminary data suggest that the use of telemonitoring services in the management of persons affected by DoC is feasible and well accepted by caregivers, with a potential positive effect on their mood and QoL. Therefore, telemonitoring should be considered in the management of DoC patients to favour discharge from acute care and to support families in home care. © The Author(s) 2016.
Xu, Ling; Tang, Fengyan; Li, Lydia W; Dong, Xin Qi
Though ample research on grandparent caregiving and psychological well-being outcomes exist in Western literature, little attention has been focused on Chinese American grandparents. Based on role enhancement and role strain theories, this study examined grandparent caregiving and psychological well-being among Chinese American older adults and tested whether caregiving burden or pressure from adult children moderated such association. We used the data from the Population Study of ChINese Elderly in Chicago (PINE), a population-based survey of community-dwelling Chinese older adults in the Greater Chicago area. Grandparents with grandchildren younger than 16 years old were selected for present study (N = 2,775). Negative binominal regression and logistic regression models were used to test the relationships of grandparent caregiving time and psychological well-being measured by depressive symptoms and quality of life. Grandparents reported an average of 11.96 hours a week for caring for grandchildren. Caregiving time had a significantly negative association with depressive symptoms, but not with quality of life. The association between grandparent caregiving and depressive symptoms was moderated by the perception of caregiving burden. No moderating effect of caregiving pressure from adult children was found. More time spending on grandparent caregiving is generally beneficial to Chinese American grandparents' psychological well-being, thus supporting role enhancement theory. However, this association depends on whether this experience is a burden to the grandparents, therefore role strain theory is also supported. Policies and programs are discussed to address the grandparenting experience in the Chinese American older adults.
Full Text Available Introduction: Children living with HIV experience particular challenges in accessing HIV care. Children usually rely on adult caregivers for access to care, including timely diagnosis, initiation of treatment and sustained engagement with HIV services. The aim of this study was to inform the design of a community-based intervention to support caregivers of HIV-positive children to increase children's retention in care as part of a programme introducing decentralized HIV care in primary health facilities. Methods: Using an existing conceptual framework, we conducted formative research to identify key local contextual factors affecting children's linkages to HIV care in Harare, Zimbabwe. We conducted semi-structured interviews with 15 primary caregivers of HIV-positive children aged 6–15 years enrolled at a hospital clinic for at least six months, followed by interviews with nine key informants from five community-based organizations providing adherence support or related services. Results: We identified a range of facilitators and barriers that caregivers experience. Distance to the hospital, cost of transportation, fear of disclosing HIV status to the child or others, unstable family structure and institutional factors such as drug stock-outs, healthcare worker absenteeism and unsympathetic school environments proved the most salient limiting factors. Facilitators included openness within the family, availability of practical assistance and psychosocial support from community members. Conclusions: The proposed decentralization of HIV care will mitigate concerns about distance and transport costs but is likely to be insufficient to ensure children's sustained retention. Following this study, we developed a package of structured home visits by voluntary lay workers to proactively address other determinants such as disclosure within families, access to available services and support through caregivers’ social networks. A randomized controlled
Vico Chung Lim Chiang
Full Text Available Having a loved one in the intensive care unit (ICU is a stressful event, which may cause a high level of anxiety to the family members. This could threaten their wellbeing and ability to support the patients in, or after discharge from, the ICU. To investigate the outcomes of a brief cognitive-behavioral psycho-education program (B-CBE to manage stress and anxiety of the main family caregivers (MFCs, a pragmatic quasi-experimental study involving 45 participants (treatment group: 24; control group: 21 was conducted in an ICU. The Depression and Anxiety Stress Scale and the Critical Care Family Need Inventory were used to evaluate the primary outcomes on stress and anxiety, and satisfaction with family needs. The treatment group reported significantly better improvement in the information satisfaction score compared to the control group (p < 0.05; η2 = 0.09. Overall main effects were observed on the stress (p < 0.01; η2 = 0.20, anxiety (p < 0.01; η2 = 0.18, depression (p < 0.05; η2 = 0.13, support satisfaction (p < 0.05; η2 = 0.13, and comfort satisfaction (p < 0.05; η2 = 0.11 scores. The experience of this study suggest that MFCs are in great need of additional support like B-CBE to manage their stress and anxiety. Given the brevity of B-CBE, it is practical for critical care nurses to deliver and MFCs to take within the industrious context of an ICU. More studies are needed to investigate these types of brief psychological interventions.
Cwiak, Carol L
The number of emergency management higher education programs has grown dramatically since 1994 when the FEMA Higher Education Program was created to propagate and support such growth. Data collected annually since 2007 from emergency management higher education programs shows that these programs face some consistent challenges. These challenges were coupled with annual data on program access and support indicators via dimensional analysis to answer the questions: To what extent are the challenges linked to a lack of access or support? If there is linkage, what can be gleaned from these linkages that can help address the challenges through improving access and support? The analysis showed that lack of access to funding and resources, and lack of support from partner organizations, has an impact on emergency management higher education. Discussion of that impact is followed with detailed recommendations that are focused on strengthening both internal and external access and support relationships for emergency management higher education programs.
Asscher, J.J.; Hermanns, J.M.A.; Dekovic, M.; Reitz, E.
The current study examines predictive effects of participant's characteristics, program characteristics, and their interaction, on changes in parenting behavior of mothers who participated in the Home-Start parenting support program. The results confirm previous findings that effects of
Boivin, Michael J; Bangirana, Paul; Nakasujja, Noeline; Page, Connie F; Shohet, Cilly; Givon, Deborah; Bass, Judith K; Opoka, Robert O; Klein, Pnina S
To evaluate mediational intervention for sensitizing caregivers (MISC). MISC biweekly caregiver training significantly enhanced child development compared with biweekly training on health and nutrition (active control) and to evaluate whether MISC training improved the emotional well-being of the caregivers compared with controls. Sixty of 120 rural Ugandan preschool child/caregiver dyads with HIV were assigned by randomized clusters to biweekly MISC training, alternating between home and clinic for 1 year. Control dyads received a health and nutrition curriculum. Children were evaluated at baseline, 6 months, and 1 year with the Mullen Early Learning Scales and the Color-Object Association Test for memory. Caldwell Home Observation for Measurement of the Environment and videotaped child/caregiver MISC interactions also were evaluated. Caregivers were evaluated for depression and anxiety with the Hopkins Symptoms Checklist. Between-group repeated-measures ANCOVA comparisons were made with age, sex, CD4 levels, viral load, material socioeconomic status, physical development, and highly active anti-retroviral therapy treatment status as covariates. The children given MISC had significantly greater gains compared with controls on the Mullen Visual Reception scale (visual-spatial memory) and on Color-Object Association Test memory. MISC caregivers significantly improved on Caldwell Home Observation for Measurement of the Environment scale and total frequency of MISC videotaped interactions. MISC caregivers also were less depressed. Mortality was less for children given MISC compared with controls during the training year. MISC was effective in teaching Ugandan caregivers to enhance their children's cognitive development through practical and sustainable techniques applied during daily interactions in the home. Copyright © 2013 Mosby, Inc. All rights reserved.
The Training Accreditation Program (TAP) establishes objectives and criteria against which DOE nuclear facility training is evaluated to determine readiness for accreditation. TAP 3 has been developed to assist the contractor in preparing the initial Self-Evaluation Report, Training Program Accreditation Plan, and the CSER (contractor self-evaluation report).
In addition to building the capacity of BRAC's program managers to carry out rigorous impact evaluation of their key initiatives, this project will also promote the sharing of BRAC's lessons more broadly within the development research community to inform up-scaling and graduation programs in the region.
Software vulnerabilities originating from insecure code are one of the leading causes of security problems people face today. Unfortunately, many software developers have not been adequately trained in writing secure programs that are resistant from attacks violating program confidentiality, integrity, and availability, a style of programming…
Huenink, Ellen; Porterfield, Susan
Many neonatal intensive care unit (NICU) parents experience emotional distress leading to adverse infant outcomes. Parents may not cope positively in stressful situations, and support programs often are underutilized. To determine coping mechanisms utilized by NICU parents, and types of support programs parents are likely to attend. To determine whether sociodemographic and length-of-stay differences impact coping mechanisms utilized, and types of support programs preferred. A correlational cross-sectional survey design was used. The 28-item Brief COPE tool, questions about demographics and preferred support program styles, was distributed to a convenience sample of NICU parents in a level IV NICU in the southeastern United States. One hundred one NICU parents used coping mechanisms, with acceptance emotional support, active coping, positive reframing, religion, planning, and instrumental support being the most common. Preferred support classes were infant development and talking with other NICU parents. Caucasians more commonly coped using active coping, planning, emotional support, acceptance, instrumental support, and venting compared with other races. Women utilized self-blame coping mechanisms more often compared with men. Younger parents were more likely to use venting and denial coping mechanisms. Parents with a shorter stay utilized self-distraction coping and preferred the class of talking with other parents. Support program preference, type of coping mechanism utilized, and sociodemographic factors may be used to guide the creation of NICU support programs. Additional studies are needed to determine whether support program offering according to preferences and sociodemographic characteristics increases attendance and decreases emotional distress.
Grant, Marcia; Ferrell, Betty
To describe the clinical, education, and research roles of professional nurses caring for family caregivers. DATA SCORES: Review of literature and Websites on the professional nursing role and family caregivers. The growing number of family caregivers of cancer patients will need education and support. The professional oncology nurse is best suited to assess, teach, and support these family caregivers, as well as contribute to the evidence base of these areas of practice. Professional nurses caring for oncology patients need to expand their role to include additional support and education of family caregivers. Copyright © 2012 Elsevier Inc. All rights reserved.
Wrobel, Jérémy; Cantegreil-Kallen, Inge; Dub, Timothée; Rouquette, Alexandra; Rigaud, Anne-Sophie
Background Although several face-to-face programs are dedicated to informal caregivers of persons with dementia, they are not always accessible to overburdened or isolated caregivers. Based on a face-to-face intervention program, we adapted and designed a Web-based fully automated psychoeducational program (called Diapason) inspired by a cognitive approach. Objective This study aimed to evaluate through a pilot unblinded randomized controlled trial the efficacy and acceptability of a Web-based psychoeducational program for informal caregivers of persons with Alzheimer’s disease (PWAD) based on a mixed methods research design. Methods We recruited and randomized offline 49 informal caregivers of a PWAD in a day care center in Paris, France. They either received the Web-based intervention and usual care for 3 months (experimental group, n=25) or only usual care (control group, n=24). Caregivers’ perceived stress (PSS-14, primary outcome), self-efficacy, burden, perceived health status, and depression (secondary outcomes) were measured during 3 face-to-face on-site visits: at baseline, at the end of the program (month 3), and after follow-up (month 6). Additionally, semistructured interviews were conducted with experimental group caregivers at month 6 and examined with thematic analysis. Results Intention-to-treat analysis did not show significant differences in self-perceived stress between the experimental and control groups (P=.98). The experimental group significantly improved their knowledge of the illness (d=.79, P=.008) from baseline to month 3. Of the 25 participants allocated to the experimental group, 17 (71%) finished the protocol and entirely viewed at least 10 of 12 online sessions. On average, participants used the website 19.72 times (SD 12.88) and were connected for 262.20 minutes (SD 270.74). The results of the satisfaction questionnaire showed that most participants considered the program to be useful (95%, 19/20), clear (100%, 20/20), and
Mayberry, Lindsay S; Heflinger, Craig Anne
Family caregivers' conceptualizations of their child's emotional and behavioral problems (EBP) influence help-seeking for the child and caregiver strain. We analyzed 21 interviews with caregivers to explore their conceptualizations about the cause of their child's EBP, their experiences of strain, and their reported help-seeking behaviors. Caregivers had divergent conceptualizations of their child's EBP: 12 caregivers viewed the EBP as caused by a disorder and described the onset of symptoms as the central stressful event, whereas 9 caregivers described their child's problems as a response to an earlier stressor (e.g. trauma, abuse, divorce). Different patterns of caregiver strain and help-seeking were associated with caregiver conceptualization. All caregivers voiced a need for peer-to-peer support for caregivers and youth with EBP.
Batcheller, A. L.
Skilled software engineers may build fantastic software for climate modeling, yet fail to achieve their project’s objectives. Software support and related activities are just as critical as writing software. This study followed three different software projects in the climate sciences, using interviews, observation, and document analysis to examine the value added by support work. Supporting the project and interacting with users was a key task for software developers, who often spent 50% of their time on it. Such support work most often involved replying to questions on an email list, but also included talking to users on teleconference calls and in person. Software support increased adoption by building the software’s reputation and showing individuals how the software can meet their needs. In the process of providing support, developers often learned new of requirements as users reported features they desire and bugs they found. As software matures and gains widespread use, support work often increases. In fact, such increases can be one signal that the software has achieved broad acceptance. Maturing projects also find demand for instructional classes, online tutorials and detailed examples of how to use the software. The importance of support highlights the fact that building software systems involves both social and technical aspects. Yes, we need to build the software, but we also need to “build” the users and practices that can take advantage of it.
Department of Housing and Urban Development — Housing Choice Voucher (HCV) Program Management Programmatic Report for April to June 2010. This is inofrmation collected from Housing Authorities across the nation...
Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L
Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for Caregivers TM . Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for Caregivers TM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for Caregivers TM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.
Nikolaos Ploskas; Nikolaos Samaras; Jason Papathanasiou
Linear programming algorithms have been widely used in Decision Support Systems. These systems have incorporated linear programming algorithms for the solution of the given problems. Yet, the special structure of each linear problem may take advantage of different linear programming algorithms or different techniques used in these algorithms. This paper proposes a web-based DSS that assists decision makers in the solution of linear programming problems with a variety of linear programming alg...
Full Text Available Alzheimer's disease (AD has a major impact by limiting the ability to live independently. This condition of dependency involves all members of the family, particularly those who take direct care of patients. The changes that take place in caregivers' lives may alter their health and have an effect on the care of the sick. OBJECTIVE: To determine the presence of burden, anxiety and depression in caregivers of Alzheimer's patients. METHOD: A descriptive cross-sectional study was performed in 67 family caregivers from the Alzheimer's Clinic Research Unit, Memory and Alzheimer, in the city of Santiago, Dominican Republic. Caregivers were evaluated for burden intensity with the Zarit scale and for both depression and anxiety using the respective Hamilton scales. Descriptive statistical analysis and Pearson correlation were used. RESULTS: 84% of caregivers were female, and 52% were older than 50 years. A total of 36% exhibited caregiver burden; 19% anxiety symptoms; and 43% depressive symptoms. No statistical significance was found between age, sex and number of hours of care. A significant association was found in the Pearson correlation coefficient between caregiver burden, anxiety and depression. CONCLUSION: Caregiver burden was associated with anxiety and depression. It is important for health professionals to include caregiver assessments in the treatment protocols of dementia. Policy should include support programs for carers.
Lawson, Karla A; Yuma-Guerrero, Paula J; von Sternberg, Kirk; Duzinski, Sarah V; Garcia, Nilda M; Brown, Carlos V; Wakefield, Sarah M; Crawford, Natalie M; Velasquez, Mary M; Maxson, R Todd
Injury is the leading cause of death for those aged 1 year to 44 years in the United States, with motor vehicle collisions (MVCs) the leading cause of injury-related deaths. Little data exist on the relationship between caregiver alcohol and drug use at the time of MVC and child passenger outcomes. We examined the relationship between caregiver substance use in MVCs and a number of demographic, crash severity, and medical outcomes for caregivers and children. We identified family groups treated in the emergency department of a regional Level II trauma center after an MVC in a 1-year period from July 1, 2005, to June 30, 2006. The distribution and means of characteristics for substance and nonsubstance users were compared using χ analysis and Student's t tests, respectively. One in 10 vehicles contained an intoxicated caregiver at the time of MVC. In 363 identified caregivers, intoxication was associated with being male (p caregivers were related to child ejection (p = 0.009), the need for child hospital admission (p caregiver. Findings support the need for prevention programs focusing on substance use and driving for male caregivers, and further investigation on the need for screening and intervention for caregivers' risky alcohol and drug use after a child's MVC.
Members of the helping professions are not immune from physical or psychological impairments that interfere with competent and ethical practice. The types of problems faced by psychologists and the help offered by one support program are presented. The purpose of the Psychologist Support Program (PSP) of the Ontario (Canada) Psychological…
Phelps, LeAdelle; Sapia, Jennifer; Nathanson, David; Nelson, Linda
An eating disorder prevention program was completed with middle school, high school, and college females. Some successful outcomes included: (1) facilitating an acknowledgement of pressures to attain a model skeletal look; (2) changing attitudes about standards of beauty; and (3) altering the participants' current and future intentional use of…
Northouse, Laurel; Schafenacker, Ann; Barr, Kathryn L.C.; Katapodi, Maria; Yoon, Hyojin; Brittain, Kelly; Song, Lixin; Ronis, David L.; An, Larry
Background Most programs addressing psychosocial concerns of cancer survivors are in-person programs that are expensive to deliver, have limited availability, and seldom deal with caregivers’ concerns. Objective This study examined the feasibility of translating an efficacious nurse-delivered program (FOCUS Program) for patients and their caregivers to a tailored, dyadic web-based format. Specific aims were to: (i) test the preliminary effects of the web-based intervention on patient and caregiver outcomes, (ii) examine participants’ program satisfaction, and (iii) determine the feasibility of using a web-based delivery format. Intervention/Methods A Phase II feasibility study was conducted with cancer patients (lung, breast, colorectal, prostate) and their family caregivers (N=38 dyads). The web-based intervention provided information and support tailored to the unique characteristics of each patient, caregiver, and their dyadic relationship. Primary outcomes were emotional distress and quality of life (QOL). Secondary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included descriptive statistics and repeated measures ANOVA. Results Dyads had a significant decrease in emotional distress, increase in QOL, and perceived more benefits of illness/caregiving. Caregivers also had significant improvement in self-efficacy. There were no changes in communication. Participants were satisfied with program usability, but recommended additional content. Conclusions It was possible to translate a clinician-delivered program to a web-based format that was easy to use and had positive effects on dyadic outcomes. Implications for Practice The web-based program is a promising way to provide psychosocial care to more patients and caregivers using fewer personnel. It needs further testing in a larger RCT. PMID:24945270
Lockwood, Anne Turnbaugh
This resource bulletin focuses on problems in the lives of adolescents that affect students' engagement in schoolwork (drug abuse, teenage pregnancy, the increasing adolescent suicide rate) and considers the school's role with and responsibility for troubled students. It looks specifically at the high school's use of support groups to help such…
Agbozo, Faith; Colecraft, Esi; Ellahi, Basma
Community-based growth promotion (CBGP) delivered by community volunteers aims at enhancing the traditional growth monitoring and promotion (GMP) program delivered by community health nurses through the promotion of optimum infant and young child feeding (IYCF) leading to improved child growth. This study compared IYCF knowledge and practices among caregiver-child pairs (0-24 months) receiving child welfare services from CBGP (n = 124) and GMP (n = 108) programs. Semistructured questionnaires were used to interview caregivers on IYCF knowledge/practices and validated food frequency questionnaire used to record infants' food intakes. Group differences were determined using Chi-square and independent samples t-tests (P children under 5 years owned by caregiver (adjusted odds ratio [AOR]: 0.405; 95% CI: 1.13-78.53, P = 0.038), her educational level (AOR: 0.112; 95% CI: 0.02-0.90, P = 0.040), and IYCF knowledge (AOR: 0.140; 95% CI: 0.03-0.79, P = 0.026) significantly predicted optimum child feeding. Nutrition education on optimum complementary feeding and birth spacing strategies should intensify.
Wang, Tze-Fang; Huang, Chiu-Mieh; Chou, Chyuan; Yu, Shu
To evaluate the effects of oral health education for caregivers on the oral health status of the elderly. A systematic review and meta-analysis. The Medline, EMBASE, Cochrane Library (CENTRAL), PsycINFO, CINAHL were searched up to September, 2014. Randomized controlled trials or comparative before-and-after studies involving an oral health education program for caregivers of the elderly (≥65 years old) were identified by two independent reviewers. Primary outcome was the percentage of patients with normal mucosa in the oral cavity. The secondary outcomes were the percentage of patients with no visible plaque and the percentage of patients without denture stomatitis. A total of five studies, involving 602 elders, met the eligible criteria for inclusion in the meta-analysis. It was found that the percentage of residents with normal oral mucosa (odds ratio (OR)=1.81, P=0.027), no visible plaque (OR=1.54, P=0.001), and no detectable denture stomatitis (OR=2.89, Peducation program. The systemic review and meta-analysis found limited evidence that oral health education for caregivers may be effective for improving the oral health of the elderly. Copyright © 2015 Elsevier Ltd. All rights reserved.
The Fiscal Year (FY) 1997 Inftastructure Program Site Support Program Plan (SSPP) addresses the mission objectives, workscope, work breakdown structures (WBS), management approach, and resource requirements for the Infrastructure Program. Attached to the plan are appendices that provide more detailed information associated with scope definition.
LGBT CAREGIVER CONCERNS IMPORTANT CONSIDERATIONS FOR LGBT CAREGIVERS LGBT CAREGIVER CONSIDERATIONS As a caregiver for someone with Alzheimer’s disease, you will face various challenges. Some are common among all ...
... heart Lifestyle + Risk Reduction Caregiving What Is Caregiver Burnout? Caregiver burnout is caused by too much long-term stress. ... themselves. They begin to show signs of caregiver burnout. Your healthy body, mind and spirit benefit your ...
Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza
Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and
Müller, Christian; Lautenschläger, Sindy; Meyer, Gabriele; Stephan, Astrid
During the transition of people with dementia from home to nursing home family caregivers often feel burdened. We aimed to 1) identify interventions which support people with dementia and their caregivers in the transition from home care to nursing home care, 2) synthesize the evidence for efficacy of these interventions, and 3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the Medical Research Council guidance on complex interventions. A systematic review of randomised controlled trials was conducted according to the recommendations specified in the Cochrane Handbook for Intervention Reviews. The review protocol was registered in PROSPERO (2015: CRD42015019839). Reporting follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement. MEDLINE, CENTRAL, PsycINFO, CINAHL, OTseeker, and PEDro, were searched. Other sources included Google Scholar, and ALOIS. Two reviewers independently assessed the eligibility of the articles. Data extraction was performed by one reviewer and verified independently by another. The Cochrane Risk of Bias tool was used for critical appraisal. Development and evaluation of the identified interventions were assessed, taking the Medical Research Council guidance into account. Review findings were synthesized narratively. The search yielded 1278 records. Five studies were included, all conducted in the United States (4 RCTs and 1 cRCT with a total of 695 participants). The psychosocial interventions were individual and family counseling via telephone or ad hoc all of which addressed only informal caregivers. The intervention components, content and mode of delivery differed widely with inconsistent results. Significant intervention effects were found for the reduction of caregivers' depressive symptoms, burden, feeling of guilt, emotional distress, overload, and interactions with staff. Other outcomes, i.e. stress, placement
Valerie E. Boyer
Full Text Available A disconnect is present between philosophical desire to actively involve caregivers in early intervention (EI and implementation by EI providers. Preservice education may shape beliefs and build knowledge and skills supporting active participation of caregivers. Two graduate clinicians in speech-language pathology completed a practicum with a two-year-old child, Sam, and his family with half of the sessions including active participation by the caregivers. Analysis of progress notes, individual reflections, and interview transcript yielded clinicians reporting beliefs in collaboration with caregivers and building relationships with caregivers as key to involving caregivers. The clinicians demonstrated knowledge regarding intervention techniques with differences in progress notes based on the presence of the caregiver in sessions. This practicum opportunity promoted development of beliefs, knowledge, and skills about actively involving caregivers in early intervention.
Kelly, Ronald; Godin, Lori
This study is an evaluation of a unique "surveillance nurse" telephone support intervention for community-dwelling elderly individuals in a home care program. A combined propensity-based covariate-matching procedure was used to pair each individual who received the intervention ("treatment" condition, nT = 930) to a similar individual who did not receive the intervention ("control" condition, nC1 = 930) from among a large pool of potential control individuals (nC0 = 4656). The intervention consisted of regularly scheduled telephone calls from a surveillance nurse to proactively assess the individual's well-being, care plan status, use of and need for services (home support, adult day program, physiotherapy, etc.) and home environment (e.g., informal caregiver support). Treatment and control conditions were compared with respect to four service utilization outcomes: (1) rate of survival in the community before institutionalization in an assisted living or nursing home facility or death, (2) rate of emergency room registrations, (3) rate of acute care hospitalizations, and (4) rate of days in hospital, during home care enrollment. Results indicated a beneficial effect of the surveillance nurse intervention on reducing rate of service utilization by increasing the duration of the home care episode. Crown Copyright © 2015. Published by Elsevier Inc. All rights reserved.
Full Text Available Background: Advance directives could be an important instrument to support a person’s will once he/she is not able to consent anymore – if composed competently. A survey was conducted to identify the level of knowledge concerning possibilities and limits of advance directives. Methods: The study was conducted as part of the Bavarian Dementia Survey (BayDem. Data were collected from January 2014 to December 2015 by structured face-to-face interviews. Study participants were persons with dementia and their informal caregivers (n = 74. Results: In total, 66% reported having written an advance directive. Concerning the participants’ knowledge about possibilities and limitations of advance directives, a lack of knowledge was noted about the possibility to revoke an advance directive. Furthermore, 70% of informal caregivers and 56% of persons with dementia were not aware of the possibility to include dementia-specific terms in the advance directive. Conclusion: It is necessary to optimize structures for public information and education concerning the topic of advance directives for persons with dementia.
Kaye, Lenard W; Crittenden, Jennifer A; Kelly, Nancy; Boylan, Deirdre
The Rural Caregiver Network Project in Eastern Maine is a prime example of indigenous coalition-building in a region struggling to ensure that vulnerable older adults can age-in-place and manage with scarce resources. Through this innovative initiative, a range of elder caregiver interventions were mobilized, coordinated, and sustained in a rural two-county region in Maine, including navigator services, adult day care, information and referral, caregiver support groups, a caregiver resource center, and caregiver skills-building workshops. The endorsement of participatory research, evaluation, and programming principles enabled undergraduate and graduate social work students to assume major roles in all aspects of project planning, implementation, and assessment while remaining grounded in the realities of rural life. Competence in such a generalist gerontological social work practice perspective is critical in small towns and nonmetropolitan communities.
van Exel, N J A; Koopmanschap, M A; van den Berg, B; Brouwer, W B F; van den Bos, G A M
We assessed the objective and subjective burden of caregiving for stroke patients and investigated which characteristics of the patient, the informal caregiver and the objective burden contribute most to subjective burden and to the condition of feeling substantially burdened. We studied a sample of 151 stroke survivors and their primary informal caregivers. We collected data through patient and caregiver interviews 6 months after stroke. Both the level of subjective burden and the condition of feeling substantially burdened were associated with both caregiver's and patient's health-related quality of life, patient's age, and the number of caregiving tasks performed. These conditions can be used in clinical practice to identify potentially vulnerable caregivers in need of support and at risk of adverse health effects. Monitoring stroke survivors as well as their family caregivers at discharge may help to prevent or alleviate caregiver burden.
Meyer, Daniel R.; Cancian, Maria; Nam, Kisun
There is little research on knowledge of the policy rules that could affect individuals, either in general or in evaluations of new programs. The lack of research is surprising, given that knowledge gaps could limit the effectiveness of reforms or lead to incorrect inferences regarding the effects of a policy change. In this article, we use survey…
Spijker, A.; Verhey, F.; Graff, M.J.L.; Grol, R.P.T.M.; Adang, E.M.M.; Wollersheim, H.C.H.; Vernooy-Dassen, M.J.F.J.
BACKGROUND: Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of
McCullagh, Emily; Brigstocke, Gavin; Donaldson, Nora; Kalra, Lalit
A large proportion of disabled stroke survivors live at home and are supported by informal caregivers. Identification of determinants of caregiver burden will help to target caregiver interventions. Data on patient, caregiver, and health and social support characteristics were collected prospectively over 1 year in 232 stroke survivors in a randomized trial of caregiver training. The contribution of these variables to caregiver burden score (CBS) and quality of life (QOL) measures at 3 months and 1 year was analyzed using regression models. Stroke patients had a mean age of 74+/-11 years, and 120 (52%) were men. The mean age of caregivers was 65.7+/-12.5 years, 149 (64%) were females, and 116 (50%) had received caregiver training. The mean CBS was 48+/-13 and 38+/-11 (score range of bad to good 88 to 22) and QOL score was 75+/-16 and 75+/-15 (score range of bad to good 0 to 100) at 3 months and 1 year, respectively. CBS and QOL correlated with each other and with patient (age, dependency, and mood), caregiver (age, gender, mood, and training), and support (social services and family networks) variables. Of these, only patient and caregiver emotional status, caregiver age and gender, and participation in caregiver training were independent predictors of either outcome at 3 months. Patient dependency and family support were additional independent predictors at 1 year. Social services support predicted institutionalization but not caregiver outcomes. Advancing age and anxiety in patients and caregivers, high dependency, and poor family support identify caregivers at risk of adverse outcomes, which may be reduced by caregiver training.
Development and evaluation of a Smartphone-enabled, caregiver-supported educational intervention for management of physical disabilities following stroke in India: protocol for a formative research study.
Sureshkumar, K; Murthy, G V S; Kinra, Sanjay; Goenka, Shifalika; Kuper, Hannah
The incidence and prevalence of stroke in India has reached epidemic proportions. The growing magnitude of disability in patients with stroke in India poses a major public health challenge. Given the nature of the condition, affected individuals often become disabled with profound effects on their quality of life. The availability of rehabilitation services for people with disabilities is inadequate in India. Rehabilitation services are usually offered by private hospitals located in urban areas and many stroke survivors, especially those who are poor or live in rural areas, cannot afford to pay for, or do not have access to, such services. Thus, identification of cost-effective ways to rehabilitate people with stroke-related disability is an important challenge. Educational interventions in stroke rehabilitation can assist stroke survivors to make informed decisions regarding their on-going treatment and to self-manage their condition with support from their caregivers. Although educational interventions have been shown to improve patient knowledge for self-management of stroke, an optimal format for the intervention has not as yet been established, particularly in low- and middle-income countries. This formative research study aims to systematically develop an educational intervention for management of post-stroke disability for stroke survivors in India, and evaluate the feasibility and acceptability of delivering the intervention using Smartphones and with caregiver support. The research study will be conducted in Chennai, India, and will be organised in three different phases. Phase 1: Development of the intervention. Phase 2: Field testing and finalising the intervention. Phase 3: Piloting of the intervention and assessment of feasibility and acceptability. A mixed-methods approach will be used to develop and evaluate the intervention. If successful, it will help realise the potential of using Smartphone-enabled, carer-supported educational intervention to
Matzke, Orville R.
The purpose of this study was to formulate a linear programming model to simulate a foundation type support program and to apply this model to a state support program for the public elementary and secondary school districts in the State of Iowa. The model was successful in producing optimal solutions to five objective functions proposed for…
Bachner, Yaacov G; Carmel, Sara
This study assesses caregivers' perceived level of open communication about illness and death with their terminally ill relatives and examines the contribution of caregivers' characteristics and situational variables to the explanation of open communication. A total of 236 primary caregivers of terminal cancer patients participated in the study. Level of open communication was measured by 6 items clustered into 1 factor. Caregivers' characteristics were composed of demographic variables, personality traits, and negative emotional reactions to caregiving. The situational variables included the duration and intensity of caregiving, and perceived functioning and suffering of the patient. Caregivers experienced substantial difficulties in communicating with patients about illness and death. Level of open communication was explained by caregivers' emotional reactions (emotional exhaustion, depression) and self-efficacy, as well as by the duration of caregiving. Intervention programs for health professionals need to focus on prevention, identification, and treatment of caregivers at risk for negative reactions to caregiving.
Miyawaki, Christina E
This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course.
... REQUIREMENTS § 944.6 Bank community support programs. (a) Requirement. Consistent with the safe and sound... annual Targeted Community Lending Plan, approved by the Bank's board of directors and subject to...
Smith, T P; Adams, R C; Brewer, C D
A supportive personnel training program based at a technical college is described. During the nine-month curriculum, the students spend time in the classroom and in a laboratory on the college campus. Part of the program is taught by the college faculty, providing the students with courses on basic chemistry, anatomy and physiology, medical vocabulary, typing, and math fundamentals. The other part of the curriculum is taught by pharmacists, including courses on hospital pharmacy, pharmacology, and pharmacy mathematics. The students' first experiences with unit-dose and i.v.-admixture programs are in an artificial laboratory under controlled conditions. Later in the program, the students rotate through each of the participating hospitals for thorough on-the-job training. By combining the resources of a local technical college and the area hospitals, a uniform program of training supportive personnel has been implemented that produces enough technical support for all the participating hospital pharmacies.
Full Text Available Code based (“white box” approach to testing can be divided into two main types: control flow coverage and data flow coverage methods. Dataflow testing was introduced for structural programming languages and later adopted for object languages. Among many tools supporting code based testing of object programs, only JaBUTi and DFC (Data Flow Coverage support dataflow testing of Java programs. DFC is a tool implemented at the Institute of Computer Science Warsaw University of Technology as an Eclipse plug-in. The objective of this paper is to present dataflow coverage testing of Java programs supported by DFC. DFC finds all definition-uses pairs in tested unit and provides also the definition-uses graph for methods. After the execution of test information which def-uses pairs were covered is shown. An example of data flow testing of Java program is also presented.
Leach, Janice [Sandia National Lab. (SNL-NM), Albuquerque, NM (United States); Snell, Mark K. [Sandia National Lab. (SNL-NM), Albuquerque, NM (United States); Pratt, R. [Sandia National Lab. (SNL-NM), Albuquerque, NM (United States); Sandoval, S. [Sandia National Lab. (SNL-NM), Albuquerque, NM (United States)
There has been a long history of considering Safety, Security, and Safeguards (3S) as three functions of nuclear security design and operations that need to be properly and collectively integrated with operations. This paper specifically considers how safety programmes can be extended directly to benefit security as part of an integrated facility management programme. The discussion will draw on experiences implementing such a programme at Sandia National Laboratories’ Annular Research Reactor Facility. While the paper focuses on nuclear facilities, similar ideas could be used to support security programmes at other types of high-consequence facilities and transportation activities.
Evans, Bronwynne C; Crogan, Neva; Belyea, Michael; Coon, David
Research on caregiving of elders in Mexican American families is urgently needed. We know little about family caregivers, family transitions in relation to the caregiving role, reciprocal impact of caregivers and care recipients on one another, adaptive strategies, positive benefits of caregiving (caregiver gain), specific caregiving burdens, or supportive interventions for family caregiving. Theory derivation using the concepts and structure of life course perspective provides a way to fill the knowledge gaps concerning Mexican American caregiving families, taking into account their ethnic status as an important Hispanic subgroup and the unique cultural and contextual factors that mark their caregiving experiences.
Washington, Karla T.; Pike, Kenneth C.; Demiris, George; Oliver, Debra Parker
Purpose The purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving. Methods Researchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (N=348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient’s diagnosis using chi-square tests for association of categorical variables and t tests for continuous variables. Results Informal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life. Conclusions While cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers’ needs. PMID:25547480
Coffman, Ian; Resnick, Helaine E; Lathan, Corinna E
Caregivers of persons with dementia/Alzheimer's disease (AD) experience considerable physical and psychological burdens associated with their caregiving role. Although mobile technologies have the potential to deliver caregiver supports, it is necessary to demonstrate that caregivers in need of these supports are technology-enabled, that they can be identified and accessed, and that they experience the same unfavorable mental health outcomes characteristic of the broader caregiving population. Our objective was to enroll a cohort of technology-enabled caregivers to determine basic demographic characteristics and assess level of caregiver burden, depression, anxiety, and sleep disturbance as part of a larger project to deliver caregiver support. Web-based enrollment and data collection measuring caregiver burden with the Zarit Burden Interview (ZBI), anxiety and depression with the M-3, and sleep disturbance with the PROMIS Sleep Disturbance form. A total of 165 caregivers enrolled via an online portal, all of whom provided care for someone with AD and owned a smart phone. Mean age of this group with 57.9 years, 90.3% was female, 88.5% was White, 51.5% reported providing care for a parent, 9.3% reported providing care for more than 10 years, and 24.8% reported providing more than 100 hours of care each week. Sixty-four percent of caregivers screened positive for both anxiety and depression, and nearly 62% of the sample had moderate or severe caregiver burden. Scores on depression, anxiety, and sleep quality assessments correlated moderately or strongly with caregiver burden. Dementia caregivers with Internet and smartphone access demonstrate high levels of caregiver burden, depression, and anxiety, and are well-suited to receive caregiver support services delivered via mobile devices that target these issues.
Hou, Rebecca Jing; Wong, Samuel Yeung-Shan; Yip, Benjamin Hon-Kei; Hung, Anchor T F; Lo, Herman Hay-Ming; Chan, Peter H S; Lo, Cola S L; Kwok, Timothy Chi-Yui; Tang, Wai Kwong; Mak, Winnie W S; Mercer, Stewart W; Ma, S Helen
Caregivers of people with chronic conditions are more likely than non-caregivers to have depression and emotional problems. Few studies have examined the effectiveness of mindfulness-based stress reduction (MBSR) in improving their mental well-being. Caregivers of persons with chronic conditions who scored 7 or above in the Caregiver Strain Index were randomly assigned to the 8-week MBSR group (n = 70) or the self-help control group (n = 71). Validated instruments were used to assess the changes in depressive and anxiety symptoms, quality of life, self-efficacy, self-compassion and mindfulness. Assessments were conducted at baseline, post-intervention and at the 3-month follow-up. Compared to the participants in the control group, participants in the MBSR group had a significantly greater decrease in depressive symptoms at post-intervention and at 3 months post-intervention (p < 0.01). The improvement in state anxiety symptoms was significantly greater among participants in the MBSR group than those of the control group at post-intervention (p = 0.007), although this difference was not statistically significant at 3 months post-intervention (p = 0.084). There was also a statistically significant larger increase in self-efficacy (controlling negative thoughts; p = 0.041) and mindfulness (p = 0.001) among participants in the MBSR group at the 3-month follow-up compared to the participants in the control group. No statistically significant group effects (MBSR vs. control) were found in perceived stress, quality of life or self-compassion. MBSR appears to be a feasible and acceptable intervention to improve mental health among family caregivers with significant care burden, although further studies that include an active control group are needed to make the findings more conclusive.
Jeong, Ihnsook; Kim, Jiyun; Im, Sook Bin
The purpose of this study was to develop a financial support program for high-risk pregnant women based on opinions obtained using a questionnaire survey. The program development involved two steps: (1) developing a questionnaire through reviewing previous financial support programs for maternal care and then validating it via professional consultation; and (2) drafting a financial support program. Sixty professionals, 26 high-risk pregnant women, and 100 program implementers completed the questionnaire between August 2014 and October 2014. Based on the obtained professional consultation and survey investigation, the framework of the financial support program was constructed. The suggested recipients were mothers with early labor pains, mothers who have been hospitalized for > 3 weeks, and mothers who used uterine stimulant Pitocin during hospitalization. All hospitalization, medication, and examination costs needed to be supported considering the income level of the recipient. A basic policy for financially supporting high-risk pregnant women has been developed. The efficacy and feasibility of the policy needs to be carefully examined in future studies.
Orte, Carmen; March, Marti X.; Vives, Margarita
In addition to educating and extending knowledge, university programs for seniors, at least the university program for seniors at the University of the Balearic Islands during the period analyzed, also fulfil physical and psychological health-related functions specifically related to our analysis of social support. This article reaches several…
Haasl, Beth; Marnocha, Jean
This participant workbook contains goals and activities for children in the Bereavement Support Group Program for Children. The six session program is designed for children between the ages of 6 and 15 who have experienced the death of a loved one or other significant losses. Sections are devoted to death and grief, feelings and self-esteem,…
Ithaca Public Schools, NY.
Described is the development and operation of Ithaca (New York) City School District's Comprehensive Support Services Program (CSSP), a diagnostic prescriptive approach to coordinating services for children with learning problems. Listed are program activities (such as providing training opportunities for the total teaching staff) and program…
Zlatanovska, Biljana; Stojanova, Aleksandra; Kocaleva, Mirjana; Stojkovic, Natasa; Krstev, Aleksandar
In this paper, we give а connection between the mathematical notions and using the computer as educational support at university level. Specifically, mathematical notions used in integral calculations will be explained with help of computer program. The notions, indefinite and definite integral, their calculations and their applications can be easily understand using the computer programs for their presentation. Images obtained with computer programs allows the students to better understand a...
Busby-Parker, Michelle N.
The goal of the research was to show the impact of the implementation of support services on admissions and graduation from nursing programs. The use of support services has been linked to higher levels of success in nursing students in the classroom and the work place. As nursing schools experience pressure to increase the student capacity to…
Clarke, David James; Godfrey, Mary; Hawkins, Rebecca; Sadler, Euan; Harding, Geoffrey; Forster, Anne; McKevitt, Christopher; Dickerson, Josie; Farrin, Amanda
... patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change...
Given, Barbara A; Given, Charles W; Sherwood, Paula
To provide an overview of the factors that challenge family caregivers of patients with cancer and review issues related to the role of family members as caregivers. Research based and other articles and reports from the government and professional groups. There are many challenges for family caregivers of cancer patients. Nurses must be sensitive to the unmet needs of caregivers and provide the support they need to provide patient care. Health policy is needed to provide support to these caregivers. Nurses must take a leadership role to provide standards, guidelines, and best practices for support of the caregiver. Copyright © 2012 Elsevier Inc. All rights reserved.
Ripley, Neil; Simpson, Trevor; Leir, Mark [BGC Engineering, 500-1045 Howe St, Vancouver, BC (Canada)], email: email@example.com, email: firstname.lastname@example.org, email: email@example.com
In a pipeline project, managing geotechnical, hydrotechnical and seismic hazard risks is of high importance. A field based systematic methodology, the geohazard management program, has been created to assist operators with the management of those risks. The purpose of this paper is to present this program from a geomatics perspective. Several geomatics tasks have to be completed under the program, from identifying potential hazards to setting up and supporting field navigation. To help the crews with those tasks, GIS and IT are used. In particular, Cambio is an internet database helping the management of geohazards by allowing access to the information from any site with the Internet. In addition, GIS analysis allows potential hazards to be identified. This paper showed the importance of geomatics support for identifying natural hazards and supporting field inspection missions for a pipeline Geohazard Management Program.
Full Text Available The program gama-local is a part of GNU Gama project and allows adjustment of local geodetic networks. Before realization of this project the program gama-local supported only XML as an input. I designed and implemented support for the SQLite database and thanks to this extension gama-local can read input data from the SQLite database. This article is focused on the specifics of the use of callback functions in C++ using the native SQLite C/C++ Application Programming Interface. The article provides solution to safe calling of callback functions written in C++. Callback functions are called from C library and C library itself is used by C++ program. Provided solution combines several programing techniques which are described in detail, so this article can serve as a cookbook even for beginner programmers. This project was accomplished within my bachelor thesis.
Optimising self-care support for people with heart failure and their caregivers: development of the Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) intervention using intervention mapping.
Greaves, Colin J; Wingham, Jennifer; Deighan, Carolyn; Doherty, Patrick; Elliott, Jennifer; Armitage, Wendy; Clark, Michelle; Austin, Jackie; Abraham, Charles; Frost, Julia; Singh, Sally; Jolly, Kate; Paul, Kevin; Taylor, Louise; Buckingham, Sarah; Davis, Russell; Dalal, Hasnain; Taylor, Rod S
We aimed to establish the support needs of people with heart failure and their caregivers and develop an intervention to improve their health-related quality of life. We used intervention mapping to guide the development of our intervention. We identified "targets for change" by synthesising research evidence and international guidelines and consulting with patients, caregivers and health service providers. We then used behaviour change theory, expert opinion and a taxonomy of behaviour change techniques, to identify barriers to and facilitators of change and to match intervention strategies to each target. A patient and public involvement group helped to identify patient and caregiver needs, refine the intervention objectives and strategies and deliver training to the intervention facilitators. A feasibility study (ISRCTN25032672) involving 23 patients, 12 caregivers and seven trained facilitators at four sites assessed the feasibility and acceptability of the intervention and quality of delivery and generated ideas to help refine the intervention. The Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) intervention is a comprehensive self-care support programme comprising the "Heart Failure Manual", a choice of two exercise programmes for patients, a "Family and Friends Resource" for caregivers, a "Progress Tracker" tool and a facilitator training course. The main targets for change are engaging in exercise training, monitoring for symptom deterioration, managing stress and anxiety, managing medications and understanding heart failure. Secondary targets include managing low mood and smoking cessation. The intervention is facilitated by trained healthcare professionals with specialist cardiac experience over 12 weeks, via home and telephone contacts. The feasibility study found high levels of satisfaction and engagement with the intervention from facilitators, patients and caregivers. Intervention fidelity analysis and stakeholder feedback suggested
McCusker, Jane; Yaffe, Mark; Sussman, Tamara; Cole, Martin; Sewitch, Maida; Strumpf, Erin; Freeman, Ellen; Lambert, Sylvie; de Raad, Manon
Objectives A research group based at St. Mary's Research Centre, St. Mary's Hospital, Montreal, has conducted a research program over the past two decades that aims to inform improvements in the management of depression in primary care and general medical settings, among older adults. This paper reviews the findings from this research program, discusses the findings in the context of other research, and highlights the implications for practice and health policy.Methods Narrative review and synthesis of 25 published articles, that included: 4 systematic reviews, 10 observational studies, 9 intervention trials, and 2 consensus conference reports.Results The results pertain to 4 research areas: detection of depression in primary care and general medical settings; collaborative care of depression; depression self-care interventions; and the role of family and friends in supporting depression self-care interventions.Conclusions We propose six recommendations for improving the management of depression in the target population. 1) Depression detection and treatment can be improved through collaborative care models that involve primary care physicians, mental health specialists and non-physician mental health workers who are trained to assist with the detection of depression, with the delivery of brief, low-intensity psychological interventions and with self-care support. More research and evaluation are necessary to determine the factors that enhance the effectiveness, cost-efficiency, and consumer-centeredness of these interventions. 2) Supported depression self-care (and other low-intensity interventions such as short problem-solving therapy) offered by telephone or via internet, either as part of collaborative or usual care are feasible treatment options but more research is necessary to determine their effectiveness in different clinical populations. Some populations (e.g., those aged 75 and over, with visual and/or mild cognitive impairment) are likely to need
Mellon, Suzanne; Northouse, Laurel L; Weiss, Linda K
Although survival rates for all cancers continue to increase, few studies have examined the quality of life of both cancer survivors and family caregivers during the survivorship period after treatment has ended. Information is lacking on the stressors, resources, meaning, and quality of life reported by survivors and family caregivers and the interrelationship between survivors' and family caregivers' quality of life. A stratified, random sample of 123 cancer survivors and 123 family caregivers (N = 246) were interviewed in an exploratory, cross-sectional design 1-6 years after cancer treatment had ended. Approximately half (N = 62) of the dyads were white and half (N = 61) were African American. Results indicated that cancer survivors reported significantly higher quality of life, less fear of cancer recurrence, and more support than their family caregivers. The strongest predictors for cancer survivors' quality of life were family stressors, social support, meaning of the illness, and employment status, whereas the strongest predictors for family caregivers' quality of life were fear of recurrence and social support. Both the survivor's and family caregiver's quality of life independently contributed to the other's quality of life. Findings from this study suggest the importance of including both survivors and family caregivers in programs of care.
Kent, Erin E; Rowland, Julia H; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O'Mara, Ann; Huss, Karen
Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2-day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient-caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987-95. © 2016 American Cancer Society. © 2016 American Cancer Society.
MacHale, Rosemary; McEvoy, John; Tierney, Edel
Background: Care staff are an important source of information and support for people with intellectual disabilities following bereavement. The purpose of this study was to explore staff perceptions of service users' conceptualizations of death, reactions to bereavement, required levels of support and staff confidence in providing post-bereavement…
McNew, Ryan E; Gordon, Jeffry S; Weiner, Elizabeth E; Trangenstein, Patricia
Academic success requires support on a variety of levels as well as access to contemporary tools and services. Supporting students enrolled in a successful higher education distance learning program, requires a strong, properly trained IT support staff in addition to a stable IT environment. Our distance education program began with a regional market but has grown significantly over the past few years. This is primarily due to the success of our distance education tools and support which have contributed to achieving a ranking of eleventh of best graduate schools in nursing according to the U.S. News and World Report. The entire student population is "Bring Your Own Devices" (BYOD). Critical to this support is the initial configuration and loading of needed software during the first week of orientation. All of this success requires a robust team of members prepared in a range of skill sets from networking to instructional design.
Full Text Available The paper evaluates the principle of addi-tionality in public support programs at local level. In the evaluation of public support policies a key question is whether the policy has made a differ-ence over what would have otherwise occurred. This could be measured by different ways as out-put, behavioral or input additionality. In this paper we analyze the impact of public support programs on input additionality as the extent to which the subsidy is refected in increased expenditures by supported subjects through the measurement of substitution effect. We studied public investment subsidies in the case of education support in Slo-vakia. We identifed the substitution effect in 10% of the analyzed municipalities. There are several differences in outcomes.An important factor is the size of the city as larger municipalities reduce their other activities when obtaining the support. We also showed that less developed regions have a lower tendency to misuse the support programs. The more de-veloped regions and cities reduce their own spending on a given priority when obtaining the support.
Chang, Hsing-Yi; Chiou, Chii-Jun; Chen, Nain-Sen
Caregivers providing care to chronically ill family members at home are potentially at risk for caregiver burden and declining physical and psychological health. This study aims to understand how family caregivers' mental health and caregiver burden affects physical health simultaneously, controlling for factors such as age, education level, caring hours per day, and emotional, functional, and physical support systems used by caregivers. We recruited 388 caregivers from Kaohsiung and Pingtong region in Taiwan. Caregivers had to be 18 years or older and spend most of their time taking care of an ill family member at home. Mental health was assessed by the 12-item Chinese Health Questionnaire (CHQ-12) and burden was measured using a modified scale for caregiver's burden. Health status was assessed by self-perceived health (SPH), illness symptoms and the number of diagnosed chronic diseases. A high number of hours per day of caregiving was associated with low emotional support and SPH, poor mental health and high burden. Higher emotional support was associated with better mental health and fewer illness symptoms. Higher physical support was associated with poorer mental health, higher burden, a greater number of illness symptoms and chronic diseases, and a lower SPH score. Hours per day of caregiving, and use of emotional, functional, and physical support were associated with mental health, and the hours per day of caregiving and use of physical support were predictors of burden. Mental health and burden were significantly associated with caregivers' health problems simultaneously. Our results show the important influence of mental health on caregivers' physical health. Interventions for caregivers need to target health in a holistic way. Copyright (c) 2009 Elsevier Ireland Ltd. All rights reserved.
Kusano, Claudia T; Bouldin, Erin D; Anderson, Lynda A; McGuire, Lisa C; Salvail, Florentina R; Simmons, Katrina Wynkoop; Andresen, Elena M
Given the unpaid nature of the work, informal caregiving can create a financial burden for caregivers. Little has been done to identify specific predictors of experiencing financial burden. This study investigated demographic and health factors comparing caregivers who reported having or not having financial burden. Data are derived from adult caregivers (N = 3,317) as part of the 2007 Behavioral Risk Factor Surveillance System in Hawaii, Kansas, and Washington. The adjusted odds ratios for reporting a financial burden were estimated for demographic and other risk factors. Caregivers who reported a financial burden were younger, had lower incomes, were more likely to be current smokers, have had a stroke, and rate their health as fair or poor compared to caregivers who did not report a financial burden. Caregivers who were younger (ages 18-34), resided with care recipients, spent 20-39 hours per week providing care, and reported having a disability were at a statistically significantly higher odds of reporting a financial burden. Given the current economic difficulties faced by many Americans, further insights into the perceived financial burdens experienced by informal caregivers as well as linkages to policy and programs designed to support caregivers are critical for public health professionals to address the expanding needs in states and communities. Published by Elsevier Inc.
Andrew T Olagunju
Full Text Available Background: Children with neurodevelopmental disorders (CNDs are a group requiring more attention as their care is often challenging, particularly for parents with primary caregiving roles in resource-restricted settings. This study had set out to investigate the burden and psychological distress among caregivers of children with neurodevelopmental delays. Materials and Methods: A total of 68 caregivers were recruited during the 2013 annual autism health program organized by the College of Medicine, University of Lagos in collaboration with Guaranty Trust Bank, Nigeria and Blazing Trails, USA. Of these caregivers, 60 respondents (caregivers and children were included in the final analyses due to poorly completed questionnaires. The Zarit Caregivers Burden Scale (ZCBS and General Health Questionnaire version 12 (GHQ-12 were administered to elicit caregivers' experience with respect to burden and psychological distress, respectively. Results: Of the 60 participants included in the final analyses, the majority constituted parents (96.3% with mothers accounting for 71.7%; 28 (46.7% participants were government workers and 3 (5% were full-time housewives. The mean age of CNDs was 6.8 (±3.2 years, and 33 (55.0% were males. Delivery by cesarian section was reported in 19 (31.8%. The common presenting complaints by caregivers were inability to walk (32.7%, repetitive behavior (25.5%, difficulty with verbal communication (10.9%, nonsocialization (9.1%, seizures (9.1%, and hyperactivity (3.6%. Problems were noticed at ≤ 1 year in 46.7% while they were noticed after 2 years in more than half the children, and a little above one-eighth (14% had siblings with similar problems. On the ZCBS, nine (15.0% caregivers reported a significant burden. In addition, 23 (38.3% caregivers had psychological distress. Caregivers' burden was significantly related to the report of psychological distress in caregivers (P < 0.001 and there was a trend toward the presence of
Huis In Het Veld, Judith G; Willemse, Bernadette M; van Asch, Iris Fm; Groot Zwaaftink, Rob Bm; Verkade, Paul-Jeroen; Veldhuijzen, Nienke J; Verkaik, Renate; Blom, Marco M; Francke, Anneke L
Online interventions are potentially effective ways to support family caregivers in the management of behavior changes in their relative with dementia. The objective of this paper is to present the design of a study evaluating and comparing 3 intervention arms for online self-management support. A randomized controlled trial (RCT) will be conducted with a total of 81 family caregivers of community-dwelling people with dementia in the Netherlands. Family caregivers will be randomly allocated to one of the following intervention arms: (1) a major self-management support intervention consisting of personal email contacts with a nurse specialized in dementia care, online videos, and electronic bulletins (e-bulletins); (2) a medium self-management support intervention consisting of only online videos and e-bulletins; and (3) a minor self-management support intervention with only e-bulletins. The primary outcome is the self-efficacy of the family caregiver. The secondary outcomes are the behavior problems of the person with dementia as reported by the family caregiver, and positive and negative aspects of the relationship. Background characteristics (eg, type of family relationship) will also be assessed. All data for the RCT will be collected via online questionnaires, administered before the intervention (T0), after 6 weeks (T1), and after 12 weeks (T2). Alongside the RCT, a process evaluation will be conducted, based on a number of evaluation questions and semi-open interviews with family caregivers. Data collection will be completed in August 2017. Study results will be reported in early 2018. The study will shed more light on the effect of online self-management support interventions and insights will be gained into whether a major intervention, consisting of personal email contacts with specialized nurses, videos, and e-bulletins, has more effect than smaller online interventions. This is relevant in an age with increasing numbers of people with dementia, growing
Boyd, Rhonda C; Gerdes, Marsha; Rothman, Brooke; Dougherty, Susan L; Localio, Russell; Guevara, James P
Caregiver depression impacts parenting behaviors and has deleterious effects on child behavior. Evidence-based interventions to address parenting have not been adapted for use with depressed caregivers in pediatric primary care settings. Our study examined the feasibility and explored outcomes of an evidence-based parenting program implemented in primary care and adapted for caregivers with depressive symptoms caring for toddlers. We conducted a randomized controlled trial with a wait-list control. Participants were caregivers who screened positive for depressive symptoms in pediatric settings with a toddler. Our study was implemented from July 2011 to June 2012. We adapted the Incredible Years Parents, Babies and Toddlers program with the addition of depression psychoeducation (12 weekly sessions), and assessed caregivers at baseline and immediately post-intervention. We assessed participation rates, depressive symptoms, parenting discipline practices, social support, and parenting stress. Our results revealed that 32 caregivers participating in the intervention group had significantly greater improvement in self-reported parenting discipline practices compared to the 29 wait-list control group caregivers. We found no differences between groups in depressive symptoms, social support, or parenting stress. Our study demonstrated that the average attendance was poor (mean attendance = 3.7 sessions). We adapted an evidence-based parenting intervention for caregivers with depressive symptoms and toddlers in primary care; however, participation was challenging. Alternative intervention strategies are needed to reach and retain low-income caregivers with depression symptoms as they face multiple barriers to participation in groups within center-based services. Trial Registration Clinical Trials.gov identifier NCT01464619.
Bejjani, Carla; Snow, A Lynn; Judge, Katherine S; Bass, David M; Morgan, Robert O; Wilson, Nancy; Walder, Annette; Looman, Wendy J; McCarthy, Catherine; Kunik, Mark E
This study examined the characteristics of caregivers and persons with dementia (PWD) to determine their association with caregiver depression. Participants included 508 PWD (veterans) and 486 caregivers from Boston, Houston, Providence, Beaumont (Texas), and Oklahoma City, identified from diagnoses from medical records and recruited from February 2007 to July 2009, for a larger study evaluating Partners in Dementia Care, a care-coordination intervention. Characteristics evaluated for PWD included activities of daily living, instrumental activities of daily living, cognitive impairment, and disruptive behavior. Caregiver characteristics evaluated included caregiver unmet needs, support-service use, and number of informal helpers. Caregiver depression was measured using the Iowa form 11-item Center for Epidemiologic Studies Depression Scale. Depressed caregivers reported significantly more unmet needs than the nondepressed caregivers. Depressed caregivers also reported a high frequency of disruptive behavior in their PWD. Caregiver perceptions of unmet needs may be an important target for intervention. © The Author(s) 2012.
Rhondali, Wadih; Chirac, Anne; Laurent, Angélique; Terra, Jean-Louis; Filbet, Marilène
Depression is a serious issue for cancer patients, resulting in impaired quality of life and probably shorter survival. However, many cancer patients with depression are not treated because of the difficulties in identifying depression within this population. Our study aimed to examine caregivers' perceptions of depression among advanced cancer patients. This qualitative study employed semistructured interviews, and we analyzed data using grounded theory and qualitative methods. We recruited caregivers from our palliative care unit (PCU) at an academic medical center. We interviewed a total of 15 caregivers. Cancer patients' caregivers had a good theoretical knowledge of depression but also acknowledged that, in the context of cancer and because of their relationship with the patient, identification of depressive symptoms could be challenging. They considered themselves as partners in the patient's care with a supportive role. However, by assuming the role of partner in patient care, caregivers exposed themselves to emotional difficulties and an increased need for support and information. Our results suggest a significant impact of depression in advanced cancer caregivers, and it is therefore crucial that healthcare professionals develop educational programs targeting cancer patients' families as well as specific interventions to minimize the impact of the burden of patient care on caregivers.
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This study explored the impact of caregiving for older adults on mobility and travel : patterns. Specifically, the focus was on how caregivers managed trips on behalf of : another who receives care. Caregiving is becoming increasingly common as the :...
Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.; Achterberg, T. van
AIMS: This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles. METHODS: Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers'
Full Text Available The use of assistance dogs for children with Autism Spectrum Disorder is an emerging field, with interventions varying from formal assistance dog programs aimed at increasing child safety in public, to incorporating assistance dogs into therapy sessions. Previous reviews have suggested mostly positive outcomes from participating in such programs, however cited a lack of high quality studies available. This systematic review aims to answer the question: what effect does participating in an assistance dog program have on the quality of life of children with Autism Spectrum Disorders and their caregivers? After analysis, ten studies were deemed to meet the inclusion and exclusion criteria, and were included in the review. Findings suggest that participating in various Autism assistance dog programs can: 1 increase child safety in public, which in turn decreases self-reported parental stress and increases self-reported parental confidence in managing their child; 2 increase positive behaviours and decrease negative behaviours; and 3 facilitate motor, communication and social development. However, disparities were found between studies, particularly between quantitative and qualitative results, and between the quality of the projects’ design. These factors indicate that further, high quality research is still needed to support emerging evidence.
Design and outcomes of research regarding the question which changes in the field of housing and healthcare technology would, according to caregivers, enable people over 50 in shrinking areas in The Northern Netherlands to continue living in their own homes as long as possible.
Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee
Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.
As of April 19, 1991, technical, operational and analytic support and assistance to the offices and divisions of the Office of Renewable Energy, under contract DE-AC01-86CE30844 was completed. The overall work effort, initiated February 20, 1986, was characterized by timely, comprehensive, high quality, professional responsiveness to a broad range of renewable energy program operational support requirements. These are no instances of failure to respond, nor unacceptable response, during the five-year period. The technology program areas covered are Solar Buildings Technology, Wind Energy Technology, Photovoltaic Energy Technology, Geothermal Energy Technology, Biofuels and Municipal Waste Technology, Solar Thermal Technology, Hydropower Energy Technology, Ocean Energy Technology, and Electric Energy Systems and Energy Storage. The analytical and managerial support provided to the office and staff of the Deputy Assistant Secretary for Renewable Energy enabled a comprehensive evaluation of program and policy alternatives, and the selection and execution of appropriate courses of action from amongst those alternatives. Largely through these means the Office has been able to maintain continuity and a meaningful program thrust through the vacillations of policies and budgets that it has experienced over that it has experienced over the past five years. Appended are summaries of support activities within each of the individual technology program areas, as well as a complete listing of all project deliverables and due-dates for each submittal under the contract.
Yan, Lijing L; Chen, Shu; Zhou, Bo; Zhang, Jing; Xie, Bin; Luo, Rong; Wang, Ninghua; Lindley, Richard; Zhang, Yuhong; Zhao, Yi; Li, Xian; Liu, Xiao; Peoples, Nicholas; Bettger, Janet Prvu; Anderson, Craig; Lamb, Sarah E; Wu, Yangfeng; Shi, Jingpu
Stroke is the leading cause of death and disability in rural China. For stroke patients residing in resource-limited rural areas, secondary prevention and rehabilitation are largely unavailable, and where present, are far below evidence-based standards. This study aims to develop and implement a simplified stroke rehabilitation program that utilizes nurses and family caregivers for service delivery, and evaluate its feasibility and effectiveness in rural China. This 2-year randomized controlled trial is being conducted in 2-3 county hospitals located in northwest, northeast, and southwest China. Eligible and consenting stroke inpatients (200 in total) have been recruited and randomized into either a control or intervention group. Nurses in the county hospital are trained by rehabilitation specialists and in turn train the family caregivers in the intervention group. They also provide telephone follow-up care three times post discharge. The recruitment, baseline, intervention, follow-up care, and evaluation are guided by the RECOVER mobile phone app specifically designed for this study. The primary outcome is patients' Barthel Index (activities of daily living: mobility, self-care, and toileting) at 6 months. Process and economic evaluation will also be conducted. The results of our study will generate initial high-quality evidence to improve stroke care in resource-scarce settings. If proven effective, this innovative care delivery model has the potential to improve the health and function of stroke patients, relieve caregiver burden, guide policy-making, and advance translational research in the field of stroke care. © 2016 World Stroke Organization.
Opoku-Boateng, Yaw Nyarko; Kretchy, Irene A; Aryeetey, Genevieve Cecilia; Dwomoh, Duah; Decker, Sybil; Agyemang, Samuel Agyei; Tozan, Yesim; Aikins, Moses; Nonvignon, Justice
burden of caregiving for people living with schizophrenia in low income settings. Results underscore the need for policies and programs to support caregivers.
Shamsaei, Farshid; Cheraghi, Fatemeh; Bashirian, Saied
The aim of this study was to determine the prevalence of the burden reported by family caregivers of Patients with schizophrenia. This cross sectional study involved face-to-face interviews with family caregivers of patients with schizophrenia. Using convenience sampling, 225 caregivers were selected from Farshchian psychiatry Hospital in Hamadan, Iran from July to September 2012. Measures included patients and caregivers' demographic variables and caregivers' burden using the Zarit Burden Interview (ZBI). Data were analyzed by SPSS-18 with Pearson correlation and t-test. Using the ZBI, we found that 7.6% of the caregivers experienced "no to low" burden, 23.5% "mild to moderate", 41.8% "moderate to severe" and 27.1% "severe" burden. The mean average score of the responses to ZBI was 51.73 (SD: ± 18.23). The level of burden experienced was significantly associated with age, gender, and educational level, relation to care recipient, caregiving duration and duration of schizophrenia illness. Mental health professionals need to develop more innovative programs for families of schizophrenic patients. Furthermore, as a replacement for supporting the families and easing their burdens, it may be more effective to include them in the health care team by assigning specific tasks and providing the required resources to them to perform such tasks. .
Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available.
Maryam Vahidi, PhD Student
Conclusions: Primary caregivers need to be financially supported by the relevant organizations. Care skills training and providing palliative care seem helpful in reducing the pain and the burden of family caregivers for patients with breast cancer.
Gage-Bouchard, Elizabeth A; Devine, Katie A; Heckler, Charles E
The factors that influence caregiver coping mechanism preferences after a child's diagnosis with cancer are not fully understood. This study examines the relationship between caregivers' socio-demographic characteristics and the coping strategies they use to adapt to childhood cancer. Sixty caregivers of pediatric cancer patients completed a socio-demographic questionnaire, the Family Environment Scale, and the COPE inventory. There were no significant differences in family environment by income or education. Caregiver educational attainment was positively associated with use of planning and active coping styles, while income was not associated with caregiver coping style. Mothers were more likely than fathers to use active coping, instrumental support, religious coping, and emotional support. Men with lower education engaged in greater substance use coping and lower planning. The findings show that educational attainment and caregiver gender influence caregiver coping styles following a pediatric cancer diagnosis and suggest that educational attainment rather than financial resources drive the association between SES and coping. Programs that address educational gaps and teach caregivers planning and active coping skills may be beneficial for parents with lower educational attainment, particularly men.
A.M. Pot; Dr. J. de Lange; M.A. van 't Leven; A.E. Prick
A randomized controlled trial of a multicomponent dyadic intervention (a translated and adapted version of an intervention that has been shown to be effective for people with dementia in the USA) was performed. The exercise and support intervention was intended to reduce depressive symptoms of
Werner, Claudia Denise
The use of center child care in Western countries has increased over the last three decades and is nowadays the most frequently used type of non-parental care for children aged zero to four (OECD, 2013). The aim of the current dissertation is to shed more light on indicators of child care quality in center child care and to answer the question whether narrow-focused caregiver interventions are effective in improving child care quality. The reported meta-analysis shows that narrow-focus interv...
Full Text Available Aim/Purpose: Enrollment in online doctoral programs has grown over the past decade. A sense of community, defined as feelings of closeness within a social group, is vital to retention, but few studies have explored how online doctoral students create community. Background: In this qualitative case study, I explore how students in one online doctoral program created a learning community. Methodology: Data for the study was drawn from 60 hours of video footage from six online courses, the message boards from the six courses, and twenty interviews with first and second-year students. Contribution: Findings from this study indicate that the structure of the social network in an online doctoral program is significantly different from the structure of learning communities in face-to-face programs. In the online program, the doctoral community was more insular, more peer-centered, and less reliant on faculty support than in in-person programs. Findings: Utilizing a nested communities theoretical framework, I identified four subgroups that informed online doctoral students’ sense of community: cohort, class groups, small peer groups, and study groups. Students interacted frequently with members of each of the aforementioned social groups and drew academic, social, and emotional support from their interactions. Recommendations for Practitioners: Data from this study suggests that online doctoral students are interested in making social and academic connections. Practitioners should leverage technology and on-campus supports to promote extracurricular interactions for online students. Recommendation for Researchers: Rather than focus on professional socialization, students in the online doctoral community were interested in providing social and academic support to peers. Researchers should consider how socialization in online doctoral programs differs from traditional, face-to-face programs. Impact on Society: As universities increase online offerings
Graf, Rachel; LeLaurin, Jennifer; Schmitzberger, Magda; Freytes, I Magaly; Orozco, Tatiana; Dang, Stuti; Uphold, Constance R
Caregiver depression and burden have a detrimental effect on stroke survivors' rehabilitation and are contributors to stroke survivors' hospital readmission and institutionalization. The stroke caregiving trajectory is unique compared to other illnesses, and the effect of length of caregiving on stroke caregiver outcomes is poorly understood. Interventions can improve caregiver outcomes, but the optimal timing of these interventions is unclear. We sought to determine the relationship between: (1) length of caregiving and stroke caregiver depressive symptoms and burden, and (2) length of caregiving and amount of change in depressive symptoms and burden following the Resources and Education for Stroke Caregivers' Understanding and Empowerment (RESCUE) intervention - an online and telephone problem-solving, education, and support intervention. We analyzed retrospective data collected from 72 stroke caregivers who participated in the RESCUE intervention. Outcomes were caregiver depressive symptoms and burden. Data were analyzed using mixed-effects regression analysis. Baseline depressive symptoms and burden were both negatively related to length of caregiving (p symptoms and burden following an intervention. The interaction between changes in outcomes and length of caregiving was not significant for either depressive symptoms (p = 0.26) or burden (p = 0.10). This study contributes to the understanding of the relationship between length of caregiving and depression, burden, and intervention outcomes. Clinicians should recognize that the stroke caregiving trajectory can be nonlinear. Routine and repeated clinical assessment of caregiver well-being is needed, along with implementation of interventions when necessary, regardless of how much time has passed since the stroke.
Sullivan, Karen A; Beattie, Elizabeth; Khawaja, Nigar G; Wilz, Gabriele; Cunningham, Lauren
To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs. © The Author(s) 2014.
Xu, Yan; Nguyen, Duc; Davidson, Jana; Panagiotopoulos, Constadina
To determine the health information-seeking preferences of youth with mental health challenges and their caregivers, focusing on health literacy needs related to second-generation antipsychotics (SGAs). One hundred fifty two youth and 158 caregivers attending outpatient psychiatry clinics at BC Children's Hospital between February 2009 and December 2010 completed a SGA health literacy survey. Youth and caregivers placed emphasis on understanding the benefits and side effects of SGA-treatment, along with strategies to prevent potential side effects. While psychiatrists were viewed as a crucial source of information by both groups, pharmacists were an under-utilized resource by youth. Both youth and caregivers preferred brochures from healthcare providers, websites, and support groups to access health information; however, preferences diverged among other activities. Specifically, youth favoured practical, "hands-on" programs such as cooking and exercise classes, whereas caregivers showed greater interest in didactic presentations and conferences. Sex differences were observed in receptiveness towards certain programs and resources. The findings from this study support the inclusion of caregivers and youth of both sexes with mental health conditions in the future development of educational resources related to medications such as SGAs. Health literacy strategies need to be multi-faceted, and utilize mixed methods to ensure broad reach and applicability.
Chattillion, Elizabeth A; Mausbach, Brent T; Roepke, Susan K; von Känel, Roland; Mills, Paul J; Dimsdale, Joel E; Allison, Matthew; Ziegler, Michael G; Patterson, Thomas L; Ancoli-Israel, Sonia; Grant, Igor
This study examined whether satisfaction from leisure activities moderates the relationship between caregiving demands (i.e., hours per day spent caring for a spouse with dementia) and resting levels of the catecholamines norepinephrine (NE) and epinephrine (EPI). Spousal caregivers (n = 107; mean age = 73.95 ± 8.12 years) were assessed in home for plasma levels of NE and EPI, amount of care provided, and leisure satisfaction. Regression was used to determine whether leisure satisfaction moderated the relationship between hours providing care per day and catecholamine levels. A significant interaction was found between hours caregiving and leisure satisfaction for NE, but not for EPI. Post hoc regressions were conducted for both NE and EPI. At low leisure satisfaction, time spent caring for a spouse was positively associated with plasma NE (β = 0.41; p = 0.005) and EPI (β = 0.44; p = 0.003). In contrast, at high levels of satisfaction, time caregiving was not significantly associated with plasma NE (β = -0.08; p = 0.57) or EPI (β = 0.23; p = 0.12). These findings suggest that leisure satisfaction may protect caregivers from increases in catecholamines, which have been implicated in cardiovascular risk. Further support for these findings may impact psychological treatments for distressed caregivers.
Chattillion, Elizabeth A.; Mausbach, Brent T.; Roepke, Susan K.; von Känel, Roland; Mills, Paul J.; Dimsdale, Joel E.; Allison, Matthew; Ziegler, Michael G.; Patterson, Thomas L.; Ancoli-Israel, Sonia; Grant, Igor
This study examined whether satisfaction from leisure activities moderates the relationship between caregiving demands (i.e., hours per day spent caring for a spouse with dementia) and resting levels of the catecholamines norepinephrine (NE) and epinephrine (EPI). Spousal caregivers (N=107; mean age 73.95±8.12 years) were assessed in home for plasma levels of NE and EPI, amount of care provided, and leisure satisfaction. Regression was used to determine whether leisure satisfaction moderated the relationship between hours providing care per day and catecholamine levels. A significant interaction was found between hours caregiving and leisure satisfaction for NE, but not for EPI. Post hoc regressions were conducted for both NE and EPI. At low leisure satisfaction, time spent caring for a spouse was positively associated with plasma NE (β = .41; p = .005) and EPI (β = .44; p = .003). In contrast, at high levels of satisfaction, time caregiving was not significantly associated with plasma NE (β = −.08; p = .57) or EPI (β = .23; p = .12). These findings suggest that leisure satisfaction may protect caregivers from increases in catecholamines, which have been implicated in cardiovascular risk. Further support for these findings may impact psychological treatments for distressed caregivers. PMID:22149759
..., National Center for Homelessness Among Veterans, Supportive Services for Veteran Families Program Office... services pursuant to payments from the grantee be State-licensed because ``home run daycare and other... some jurisdictions, may include home run daycares. The commenter also requested that VA consider...
Support to the CGIAR Program on Aquaculture. More than 700 million people depend on aquatic agricultural systems (AAS) for their livelihood. These are diverse farming systems that include a mix of cultivation, livestock-raising, aquaculture, fishing, and gathering natural resources such as fruits, seeds, timber and wildlife.
Boulden, Walter T.
The Behavior Intervention Support Team (BIST) is a proactive school-wide behavior management plan for all students, emphasizing schools partnering with students and parents through caring relationships and high expectations. The BIST program is well-grounded in behavioral theory and combines strength-based and resiliency principles within the…
Barker, Ellen; And Others
This curriculum guide, part of a multi-volume dietetic support personnel training program, consists of materials (15 units) for use in training future food production workers. Covered in the first part of the guide are nutrition in food production and diet therapy. The second part of the guide deals with sanitation and safety in food production.…
Barker, Ellen; And Others
This curriculum guide, part of a multi-volume dietetic support personnel training program, consists of materials for use in training future food service supervisors. The first unit provides an overview of the field of dietetics. Addressed next are various aspects of nutrition and diet therapy as well as the functions and sources of nutrients,…
Kashyap, Abhishek; Turek, Joseph W; Wagner, Samantha J; Felderman, Laura; Jaggers, Elizabeth A; Gruber, Peter J; Edens, R Erik
The development of a pediatric cardiac support program is a complex, multidisciplinary project. This study describes the University of Iowa Congenital Heart Program's experience from its inception to the present. In, we examine those specific factors that have led to substantial improvements in the program, additionally identifying where further gains can be made. We retrospectively reviewed all pediatric patients who received mechanical cardiac support at the University of Iowa from the inception of the program in 1991. In total, 29 patients received mechanical support between December 1991 and December 2015 and are included in the study. Twelve patients received continuous flow devices and 17 patients received pulsatile flow devices. Median age at implant was 12.8 years (range 0.1-18.2 years). Median weight at implant was 40.5 kg (3.2-123.4 kg). Factors examined included: operating room (OR) time, intensive care unit and hospital length of stay, intubation days, blood product usage, pre- and post-operative bilirubin, creatinine, natriuretic peptide B (NPPB), and device implanted. Categorical and continuous variables were compared using Chi-squared and Wilcoxon rank-sum tests, respectively. Of the 29 patients who received mechanical support, 17 (58.6%) were discharged home, 11 (37.9%) died during their hospitalization, and 1 (3.5%) remains hospitalized. Median length of ventricular assist device support was 59.5 days (range 1-653 days). Between December 1991 and December 2011, in-hospital mortality was 64.3%. Following this period, significant changes were made to patient management with in-hospital mortality decreasing to 13.3% between February 2013 and December 2015. Comparison between deceased and living patients revealed several significant factors including: median number of packed red blood cells transfused, 8 versus 4 units (P = 0.048), median OR time, 396 versus 299 min (P = 0.003), and device implanted. During the early stages of the mechanical
Fletcher, Bennett W; Broome, Kirk M; Delany, Peter J; Shields, Joseph; Flynn, Patrick M
This study examined patient and program factors that influenced the receipt of scheduled supportive services in the Drug Abuse Treatment Outcome Studies (DATOS). Patients (N = 2,932) in 21 long-term residential (LTR) programs, 27 outpatient methadone treatment (OMT), and 25 outpatient drug-free programs were interviewed at admission and at 3 months during treatment. A hierarchical regression analysis was used to examine the relationship between patient-level and program-level factors associated with receiving supportive services in seven categories (medical, psychological, family, legal, educational, vocational, and financial). LTR patients received more services on average than outpatients (especially OMT), but patients overall received few services in the first 3 months of treatment. The patient-level likelihood of receiving services was related to being female and to having higher problem severity at intake. At the program level, outpatient clientele with higher problem severity received more services if they entered a program whose other enrolled patients were less troubled on average.
Becker, Kimberly D.; Darney, Dana; Domitrovich, Celene; Keperling, Jennifer Pitchford; Ialongo, Nicholas S.
Schools are adopting evidence-based programs designed to enhance students’ emotional and behavioral competencies at increasing rates (Hemmeter, Snyder, & Artman, 2011). At the same time, teachers express the need for increased support surrounding implementation of these evidence-based programs (Carter & Van Norman, 2010). Ongoing professional development in the form of coaching may enhance teacher skills and implementation (Noell et al., 2005; Stormont, Reinke, Newcomer, Darney, & Lewis, 2012). There exists a need for a coaching model that can be applied to a variety of teacher skill levels and one that guides coach decision-making about how best to support teachers. This article provides a detailed account of a two-phased coaching model with empirical support developed and tested with coaches and teachers in urban schools (Becker, Bradshaw, Domitrovich, & Ialongo, 2013). In the initial universal coaching phase, all teachers receive the same coaching elements regardless of their skill level. Then, in the tailored coaching phase, coaching varies according to the strengths and needs of each teacher. Specifically, more intensive coaching strategies are used only with teachers who need additional coaching supports whereas other teachers receive just enough support to consolidate and maintain their strong implementation. Examples of how coaches used the two-phased coaching model when working with teachers who were implementing two universal prevention programs (i.e., the PATHS® curriculum and PAX Good Behavior Game [PAX GBG]) provide illustrations of the application of this model. The potential reach of this coaching model extends to other school-based programs as well as other settings in which coaches partner with interventionists to implement evidence-based programs. PMID:23660973
Miravitlles, Marc; Peña-Longobardo, Luz María; Oliva-Moreno, Juan; Hidalgo-Vega, Álvaro
Chronic obstructive pulmonary disease (COPD) is a very prevalent and invalidating disease. The aim of this study was to analyze the burden borne by informal caregivers of patients with COPD. We used the Survey on Disabilities, Personal Autonomy, and Dependency Situations (Encuesta sobre Discapacidad, Autonomía personal y Situaciones de Dependencia [EDAD]-2008) to obtain information on the characteristics of disabled individuals with COPD and their caregivers in Spain. Additionally, statistical multivariate analyses were performed to analyze the impact that an increase in dependence would have on the problems for which caregivers provide support, in terms of health, professional, and leisure/social dimensions. A total of 461,884 individuals with one or more disabilities and with COPD were identified, and 220,892 informal caregivers were estimated. Results showed that 35% of informal caregivers had health-related problems due to the caregiving provided; 83% had leisure/social-related problems; and among caregivers of working age, 38% recognized having profession-related problems. The probability of a problem arising was significantly associated with the degree of dependence of the patient receiving care. Caregivers of patients with great dependence showed a 39% higher probability of presenting health-related problems, 27% more professional problems, and 23% more leisure problems compared with those with nondependent patients. The results show the large impact on society in terms of the welfare of informal caregivers of patients with COPD. A higher level of dependence was associated with more severe problems in caregivers, in all dimensions.
Lambert, Sylvie D; Yoon, Hyojin; Ellis, Katrina R; Northouse, Laurel
Examine the psychometric properties of the Appraisal of Caregiving Scale (ACS). Data were collected as part of the FOCUS Program trial in Michigan (N = 484 caregivers). Exploratory factor analysis found the ACS measured Threat, General Stress, and Benefit appraisals. Cronbach's alphas for all subscales exceeded 0.70. Construct validity analyses indicated the Threat subscale correlated significantly with concepts of avoidant coping, burden, and dyadic support (r > 0.30). General Stress correlated significantly with burden (r = 0.348) and dyadic support (r = -0.373), and the Benefit subscale correlated significantly with active coping (r = 0.444). Known group analyses indicated that depressed caregivers had higher Threat and General Stress scores than non-depressed caregivers. Also, younger caregivers reported significantly higher scores on the General Stress subscale than older caregivers. Predictive validity analyses found appraisal scores at baseline accounted for 33.3% of the variance in hopelessness and 27.8% of the variance in depression at Time 2. The ACS is a reliable measure of Threat, General Stress, and Benefit appraisals, with some support for its validity. Health professionals may find the ACS useful for guiding intervention development. Future research should continue to examine the ACS' validity. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
Full Text Available Satisfying the need of physical activity of children and promoting their social skills beginning from early childhood have importance by reason of providing a basis for following years. In this study, establishing process of the training program within the scope of “ Examination the Effects of Physical Education and Sports Activities to the Basic Psychomotor skills and Social Skills for Preschool Children ” named project supported by Karabuk University Coordinatorship of Scientific Research Projects has been mentioned. The training program has been intended to promote the motor and social competence of the children aged 48 months and older. In the study it has been given wide publicity to the stages of literature review, educational attainments and indicators fit for purpose, and taking an expert’s opinion. Commentary on practicing the training program integrated with preschool education program and their importances have been discussed.
Full Text Available Graduate programs provide the highest level of formal education and thus are crucial for the development of any country. However, official Brazilian data clearly show a dramatic decrease in the number and values of scholarships available to graduate programs in Brazil over the last few years, despite the importance and growth of such programs. Between 1995 and 2004, investment by the Coordenadoria de Aperfeiçoamento de Pessoal do Ensino Superior (CAPES, subordinate to the Ministry of Education and Culture in funding scholarships, corrected for inflation in the period, actually decreased by 51%. In addition, during the period between 1994 and 2004, there was a loss of about 60% in the purchasing power of the graduate scholarships provided by CAPES and the National Council for Science and Technology (CNPq. To reverse this trend, we propose the development of sectorial funding for Brazilian graduate programs to guarantee the availability and continuity of financial support for this strategic activity.
Paul B. Perrin; Ivan Panyavin; Alejandra Morlett Paredes; Adriana Aguayo; Miguel Angel Macias; Brenda Rabago; Sandra J. Fulton Picot; Juan Carlos Arango-Lasprilla
Background. Multiple sclerosis (MS) rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Bu...
Full Text Available The given article presents the analysis of the experience of the financial support of the regional programs of social economic development and the areas of usage of internal and external resources of the area. Dynamic and balanced development of regions is one of the most important issues for further establishment of marketing relations and social transformations in Ukraine. The Aim lies in the evaluation of financial support of the approved regional programs and launching the amount of their financing. The assessment of social economic situation in Ivano-Frankivsk region in terms of nationwide tendencies allows asserting that economic growth depends on the amounts and sources provided by the state. To determine close connection between the amount of financing for the programs and gross domestic product, the coefficient of correlation was calculated according to Pierson. It was proved that the amount of financing regional programs of social economic development influences the growth rate of gross domestic product. During research period the activation of regional authority institutions is being surveyed regarding the adoption and financing target regional programs. It was determined that the dynamic activity of the regional community and its territorial units on realization in terms of defined strategic priorities for programs of social economic development will facilitate disproportion reduction and differences in the development of territory units in the region, as well as positively influences the growth of gross domestic product providing steady increase of social welfare. Keywords: social economic regional development, ecology programs, social programs, gross regional domestic product, Pierson’s correlation coefficient. JEL: R 58
Villarreal-Garza, Cynthia; Martinez-Cannon, Bertha Alejandra; Platas, Alejandra; Ramos-Elias, Pier
Because of the recognized impact of breast cancer and its treatment on a young woman's life, initiatives are being established worldwide. The main aim of this review was to describe existing specialized programs that support young women with breast cancer (YWBC), advances to date, current challenges and future actions. Current programs for YWBC are now educating professionals, patients, and communities on their specific needs. Also, support groups have helped break isolation and connect YWBC together. Research on biology, treatment, adverse effects, risk factors, genetics, and social aspects on YWBC is now being actively conducted. In low- and middle-income countries, the particular issues of young women are, however, still not systematically addressed, because of scarce funding, lack of awareness of YWBC needs, and deficient provider training. Practice guidelines and algorithms should be disseminated and available for their widespread use to allow standard clinical and supportive care for YWBC even in oncologic centers where no specific programs exist. Also, cancer centers should formally commit to financing, at least partially, dedicated services, and existing programs for YWBC, guaranteeing their continuity. Finally, interinstitutional and international collaborations should be encouraged to facilitate adequately powered research, to avoid repetitive efforts, and to promote knowledge sharing and translation.
VanderVeur, Jennifer; Gilchrist, Siobhan; Matson-Koffman, Dyann
Worksite health promotion (WHP) programs can reduce the occurrence of cardiovascular disease risk factors. State law can encourage employers and employer-provided insurance companies to offer comprehensive WHP programs. This research examines state law authorizing WHP programs. Quantitative content analysis. Worksites or workplaces. United States (and the District of Columbia). State law in effect in 2013 authorizing WHP programs. Frequency and distribution of states with WHP laws. To determine the content of the laws for analysis and coding, we identified 18 policy elements, 12 from the Centers for Disease Control and Prevention's Worksite Health ScoreCard (HSC) and 6 additional supportive WHP strategies. We used these strategies as key words to search for laws authorizing WHP programs or select WHP elements. We calculated the number and type of WHP elements for each state with WHP laws and selected two case examples from states with comprehensive WHP laws. Twenty-four states authorized onsite WHP programs, 29 authorized WHP through employer-provided insurance plans, and 18 authorized both. Seven states had a comprehensive WHP strategy, addressing 8 or more of 12 HSC elements. The most common HSC elements were weight management, tobacco cessation, and physical activity. Most states had laws encouraging the adoption of WHP programs. Massachusetts and Maine are implementing comprehensive WHP laws but studies evaluating their health impact are needed.
M. Ertaç ATİLA
Full Text Available The aim of this study is to determine views of academic staff who have been to the United States in order to do a research study by means of scholarships and support programs provided by the Higher Education Council or Scientific or Technological Research Council of Turkey about the scholarship programs. The qualitative study is carried out as a holistic multiple case study research design. The data were gathered through semi-structured interviews from 10 academic staff who participated the scholarship program. Data were analyzed with content analysis technique. The results indicated that application process, time and financial resources were important for the preferences of academic staff in scholarship and support programs. The main reasons for applying the scholar program to undertake an international research study are grouped under three headings as academic, socio-cultural and foreign language improvements. The main influencing factors behind the researchers' preferences to go the United States are its' level of advancements in scientific research and peer influence. Concerning the duration of a research study in abroad the participants thought that 6 months to one year is adequate time and this time depends on the foreign language skills of the researchers, the field of study, subject and project. The main drawbacks of an international research study visit are the long waiting times for having the United States visa with no adequate support, the cost of health insurance and visa, lack of speaking foreign language skills, and adaptation time in the first arrival. As a result, the experienced participants suggested that the future scholarships have to cover health insurance; the researchers have to be supported for developing their foreign language skills and develop a clear research agenda and project prior to going abroad.
Pisters, Peter; Bien, Belinda; Dankner, Stewart; Rubinstein, Ed; Sheriff, Fatima
Although the impact the environment can have on human health is well understood, the healthcare system's impact on the environment is a topic that's only been explored since the mid-1990s. More recent has been a realization of the risks that climate change poses to health and healthcare. Although there are numerous direct benefits for hospitals adapting environmental sustainability programs, this article examines how the systemic approach taken by the University Health Network's (UHN) Energy & Environment program not only improves the hospital's environmental performance and provides significant cost savings but also supports several areas of focus that are part of UHN's current journey of renewal.
Larkin, John P.; Hopcroft, Barbara Most
Obtained data on family caregiver stress from 23 family caregivers before, during, and following respite. Findings suggest that stress was moderated by in-hospital respite program for patients with Alzheimer's disease. Although short-term benefits may be realized for caregivers, in-hospital Alzheimer's respite care may present particular risk for…
Tolmie, Rhiannon S.; Bruck, Susan; Kerslake, Rachel
A child's diagnosis with autism spectrum disorder (ASD) can be an extremely stressful time for families. Researchers suggest that the period immediately following ASD diagnosis is a key time for professionals to guide families by providing appropriate information about support options. This article describes a family support program, developed by…
Taha, Samy; Kazan, Rima Sassine
Introduction six million of deaths are due today to stroke, while stroke survivors will depend on their caregivers at home. As the literature noted in, these caregivers meet challenges and satisfactions, encouraging them to resort to adaptation strategies in order to cope with their care situation. The purpose of this article is to describe and understand the experience of Lebanese family caregivers who take care at home of a relative stroke survivor. Using the phenomenological approach of Giorgi (1997), twelve interviews were conducted with six family caregivers who have been recruited through a rehabilitation center in Beirut. Eight themes have emerged from the phenomenological analysis: the family caregiver burden, the missing social support, the learning through his experience of a family caregiver, the contribution to caregiving survivor, the selflessness in the caregiving, the gratitude in the caregiving, the familiarization with new routines and reconciliation with new lifestyle. The proposed essence from this phenomenological analysis is: the satisfaction in taking care of the stoke survivor by facing challenges and bringing order into the chaos caused by the stroke. The knowledge gained from this study would allow nurses to identify family caregivers at risk in order to help them to adapt to their new role as caregivers, and to develop health promotion strategies, taking into consideration their experience.
Badr, Hoda; Smith, Cardinale B; Goldstein, Nathan E; Gomez, Jorge E; Redd, William H
Advanced lung cancer (LC) patients and their families have reported low self-efficacy for self-care/caregiving and high rates of distress, yet few programs exist to address their supportive care needs during treatment. This pilot study examined the feasibility, acceptability, and preliminary efficacy of a 6-session, telephone-based dyadic psychosocial intervention that was developed for advanced LC patients and their caregivers. The program was grounded in self-determination theory (SDT), which emphasizes the importance of competence (self-efficacy), autonomy (sense of choice/volition), and relatedness (sense of belonging/connection) for psychological functioning. The primary outcomes were patient and caregiver psychological functioning (depression/anxiety) and caregiver burden. The secondary outcomes were the SDT constructs of competence, autonomy, and relatedness. Thirty-nine advanced LC patients who were within 1 month of treatment initiation (baseline) and their caregivers (51% spouses/partners) completed surveys and were randomized to the intervention or usual medical care. Eight weeks after baseline, they completed follow-up surveys. Solid recruitment (60%) and low attrition rates demonstrated feasibility. Strong program evaluations (mean, 8.6/10) and homework completion rates (88%) supported acceptability. Participants receiving the intervention evidenced significant improvements (P < .0001) in depression, anxiety, and caregiver burden in comparison with usual medical care. Large effect sizes (d ≥ 1.2) favoring the intervention were also found for patient and caregiver competence and relatedness and for caregiver autonomous motivation for providing care. These findings support intervention feasibility, acceptability, and preliminary efficacy. By empowering families with the skills to coordinate care and meet the challenges of LC together, this intervention holds great promise for improving palliative/supportive care services in cancer. © 2014
Browne, Julia; Penn, David L; Bauer, Daniel J; Meyer-Kalos, Piper; Mueser, Kim T; Robinson, Delbert G; Addington, Jean; Schooler, Nina R; Glynn, Shirley M; Gingerich, Susan; Marcy, Patricia; Kane, John M
This study examined perceived support for autonomy-the extent to which individuals feel empowered and supported to make informed choices-among participants in the Recovery After an Initial Schizophrenia Episode Early Treatment Program (RAISE ETP). The aims of this study were to evaluate whether NAVIGATE, the active treatment studied in RAISE ETP, was associated with greater improvements in perceived autonomy support over the two-year intervention, compared with community care, and to examine associations between perceived autonomy support and quality of life and symptoms over time and across treatment groups. This study examined perceived autonomy support among the 404 individuals with first-episode psychosis who participated in the RAISE ETP trial (NAVIGATE, N=223; community care, N=181). Three-level conditional linear growth modeling was used given the nested data structure. The results indicated that perceived autonomy support increased significantly over time for those in NAVIGATE but not in community care. Once treatment began, higher perceived autonomy support was related to higher quality of life at six, 12, and 18 months in NAVIGATE and at 12, 18, and 24 months in community care. Higher perceived autonomy support was related to improved scores on total symptoms and on excited symptoms regardless of treatment group and time. Overall, perceived autonomy support increased in NAVIGATE but not for those in community care and was related to improved quality of life and symptoms across both treatment groups. Future research should examine the impact of perceived autonomy support on a wider array of outcomes, including engagement, medication adherence, and functioning.
Gonzalez, Jodi M; Perlick, Deborah A; Miklowitz, David J; Kaczynski, Richard; Hernandez, Melissa; Rosenheck, Robert A; Culver, Jenifer L; Ostacher, Michael J; Bowden, Charles L
Little is known about the factors contributing to mental illness stigma among caregivers of people with bipolar disorder. A total of 500 caregivers of patients participating in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD) study were interviewed in a cross-sectional design on measures of stigma, mood, burden, and coping. Relatives and friends with bipolar disorder were assessed on measures of diagnosis and clinical status, determined by a days-well measure derived from psychiatrist ratings of DSM-IV episode status. Because patients' clinical status varied widely, separate models were run for patients who were euthymic for at least three-fourths of the past year (well group) and for those who met criteria for an affective episode for at least one-fourth of the previous year (unwell group). Stepwise multiple regression was used to identify patient, illness, and caregiver characteristics associated with caregiver stigma. In the unwell group, greater mental illness stigma was associated with bipolar I (versus II) disorder, less social support for the caregiver, fewer caregiver social interactions, and being a caregiver of Hispanic descent. In the well group, greater stigma was associated with being a caregiver who is the adult child of a parent with bipolar disorder, who has a college education, who has fewer social interactions, and who cares for a female bipolar patient. Mental illness stigma was found to be prevalent among caregivers of persons with bipolar disorder who have active symptoms as well as for caregivers of those who have remitted symptoms. Stigma is typically associated with factors identifying patients as "different" during symptomatic periods. Research is needed to understand how the stigma experienced by caregivers during stable phases of illness differs from the stigma experienced during patients' illness states.
Ryan, J. G.
A key challenge in developing a viable undergraduate research program is securing adequate support for the effort, both in terms of reliable financial support, and (perhaps most importantly) in terms of providing adequate student/faculty contact time. Financial support for undergraduate research is available via the NSF Research Experiences for Undergraduates Program, which provides funds for student research efforts both on relatively small scales (i.e., 1-2 students/yr via REU Supplement funds) and on much larger scales (REU Site research projects involving 10 or more students/yr). Depending on the NSF program, funds for intermediate scale undergraduate research efforts (i.e., 3-5 students/yr) may be available as Participant Support via the normal proposal submission process. For faculty at predominantly undergraduate institutions, research support obtained via the NSF RUI program and other funding outlets (i.e., ACS-PRF) presumes substantial undergraduate participation in research projects. Securing sufficient faculty contact time for undergraduate researchers is critical to their success and professional development, as well as to the ultimate success of the research. However, the additional time required to train undergraduates in research protocols, along with the challenge of working adequate research time into their generally busier class (and often work) schedules can render such efforts unproductive for research faculty. Strategies I have found helpful in getting the necessary time-on-task and contact time with student researchers include: 1) mentoring 3-4 undergraduates in group research projects, which facilitates technical training and ensures sufficient 'hands' to complete the work; 2) building technical training into traditional courses through open-ended investigative laboratory activities, such that students can begin to develop research skills, as well as the necessary investigative mindset; 3) when possible, providing stipend support for student
Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech
Introduction Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization. Material and metho...
Carbonneau, Hélène; Caron, Chantal D; Desrosiers, Johanne
Leisure represents a positive way to keep relationships satisfactory between caregivers and a person with dementia. Adapted leisure education is a promising approach to assist the family to discover new ways to share good times with their relatives. This study aimed to develop an adapted leisure education program. It included an evaluation of the caregivers' needs, the program content development, and a pilot study to experiment with the content of the program. Three focus groups of dementia caregivers (n = 19) were conducted to investigate caregivers needs. Based on content analysis of these focus groups and a literature review, the content of the program was developed. The pilot study (n = 4) included a quasi-experimental trial and an implementation evaluation. This study led to the development of an adapted leisure education program that puts caregiver support in a new perspective, focusing on positive aspects rather than the burden of caregiving.
Full Text Available Student awareness, usage, and perception of academic support programs were examined among 55 Hmong college students at a large, public western university. Twenty-eight students had participated in one or more ASPs while 27 students had not participated in any ASPs. Those who had participated found the programs to be supportive with an average rating of 7.39 out of 10 (10 being most supportive. The majority of students who did not participate in ASPs reported that they were not aware of ASPs and their services. Results also show that the majority of Hmong college students perceived a lack of time to study, poor study habits, lack of money, lack of motivation, lack of direction on career goals, and poor time management to be obstacles for them in higher education. Based on the findings, it seems ASPs were not able to reach some Hmong students with their outreach efforts. However, those that they were able to reach found academic support services helpful, especially with financial concerns and direction on career goals.
Irfan, Babar; Irfan, Omar; Ansari, Ahmed; Qidwai, Waris; Nanji, Kashmira
This study was designed to assess the impact of caregiving on the lives of the caregivers. A cross-sectional study was conducted between July and September 2015 at a teaching hospital in Karachi, Pakistan. Participants who were more than 18 years old and were involved in caregiving (former or current) of a family member were invited to participate in the study. The participants were recruited through consecutive sampling technique. A total of 400 caregivers were interviewed. Written informed consent was obtained from all the participants. A pretest structured questionnaire was used for data collection and included sections on demographic details and impact of caregiving on various aspects of the lives of caregivers. The data was analyzed using SPSS version 19 (IBM, NY, USA). Information about a total of 400 caregivers (215 men and 185 women) was included in the final analysis. The majority (57.0%) of the participants were aged between 18 and 30 years. About three-fifths (60%) of the participants were single and the majority of the participants were students. Approximately 64% of the participants were currently involved in caregiving and about 48% of the participants responded that caregiving has an overall negative impact on various aspects, such as physical (40.8%), psychological (47.8%), and professional aspects (51.8%) of their lives. Negative impact of caregiving was observed among caregivers due to extensive demands of caregiving and limited resources. Therefore, it is imperative for health care providers to explore, identify and support caregivers to cope in a better way to the challenging task of caregiving.
Luchsinger, José A; Tipiani, Dante; Torres-Patiño, Gabriela; Silver, Stephanie; Eimicke, Joseph P; Ramirez, Mildred; Teresi, Jeanne; Mittelman, Mary
Dementia prevalence and related caregiving burden are increasing, particularly among Hispanics. We studied the characteristics and mental health of Hispanic caregivers in New York City. We recruited 139 Hispanic family caregivers. We collected data on sociodemographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than US$30 000 a year. In multivariate analyses with linear regression, lower satisfaction with social networks was associated with higher caregiver burden and a greater number of depressive symptoms. Higher dementia severity was associated with higher caregiver burden, while higher caregiver comorbidities were associated with higher depressive symptoms. Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers. © The Author(s) 2015.
Shallcross, Amanda J; Visvanathan, Pallavi D; McCauley, Rochelle; Clay, Alex; van Dernoot, Peter R
This study evaluated the psychobehavioral benefits of the Children's Lives Include Moments of Bravery (CLIMB®) intervention in 45 children (aged 6-11) with a parent/caregiver with cancer. Parent/caregiver reports of psychobehavioral functioning indicated signi-ficant decreases in children's emotional symptoms and marginally significant reductions in conduct problems. Child reports of emotion regulation indicated significant increases in emotion awareness, significant decreases in emotion suppression, and nonsignificant increases in emotion-focused coping and dysregulated expression. Parents/caregivers and children reported high satisfaction with CLIMB®. Results suggest CLIMB® is a promising intervention for improving psychobehavioral functioning and emotion regulation in children with a parent/caregiver with cancer.
Northouse, Laurel; Williams, Anna-Leila; Given, Barbara; McCorkle, Ruth
To understand family caregivers' needs for better preparation and care, this state-of-the-science review examines the effect of caregiving on the health and well-being of caregivers, the efficacy of research-tested interventions on patient and caregiver outcomes, implications of the research on policy and practice, and recommendations for practice and future research. We reviewed research that described the multiple effects of cancer on caregivers' well-being. Five meta-analyses were analyzed to determine the effect of interventions with caregivers on patient and caregiver outcomes. In addition, we reviewed legislation such as the Affordable Care Act and the Family Leave Act along with current primary care practice to determine whether family caregivers' needs have been addressed. Research findings indicate that caregiver stress can lead to psychological and sleep disturbances and changes in caregivers' physical health, immune function, and financial well-being. Research-tested interventions delivered to caregivers of patients with cancer or other chronic illnesses can reduce many of these negative effects and improve caregivers' coping skills, knowledge, and quality of life. Although these interventions also decrease patients' symptoms, reduce mortality (non-dementia patients), and improve patients' physical and mental health, they are seldom implemented in practice. Recommendations for practice include development of standardized guidelines that address caregiver assessment, education, and resources; identification of "caregiver champions" in practice settings; provision of referrals to established support organizations for caregivers (eg, Cancer Support Community, Cancer Care); and collaboration among caregiving, professional, and cancer-related organizations to advocate policy and practice changes for family caregivers.
Rigby, H; Gubitz, G; Phillips, S
Abstract Caregiver burden following stroke is increasingly recognised as a significant health care concern. A growing number of studies have evaluated the patient, caregiver, and social support factors that contribute to increased caregiver burden. We conducted a systematic review of this literature to guide future research. A search of the MEDLINE, PsycINFO, CINAHL, and EMBASE databases (up to July 2008) and reference sections of published studies using a structured search strategy yielded 24 relevant articles. Studies were included if they evaluated predictors and/or correlates of caregiver burden in the setting of stroke. The prevalence of caregiver burden was 25-54% and remained elevated for an indefinite period following stroke. In studies that evaluated independent baseline predictors of subsequent caregiver burden, none of the factors reported were consistent across studies. In studies that assessed concurrent factors independently contributing to caregiver burden in the poststroke period, patient characteristics and social support factors were inconsistently reported. Several studies identified caregiver mental health and the amount of time and effort required of the caregiver as significant determinants of caregiver burden. Our findings highlight the need for more research to identify caregivers in need of support and guide the development and implementation of appropriate interventions to offset caregiver burden.
Zhu, Jun; Xie, Jing; Lipford, Heather Richter; Chu, Bill
Many security incidents are caused by software developers' failure to adhere to secure programming practices. Static analysis tools have been used to detect software vulnerabilities. However, their wide usage by developers is limited by the special training required to write rules customized to application-specific logic. Our approach is interactive static analysis, to integrate static analysis into Integrated Development Environment (IDE) and provide in-situ secure programming support to help developers prevent vulnerabilities during code construction. No additional training is required nor are there any assumptions on ways programs are built. Our work is motivated in part by the observation that many vulnerabilities are introduced due to failure to practice secure programming by knowledgeable developers. We implemented a prototype interactive static analysis tool as a plug-in for Java in Eclipse. Our technical evaluation of our prototype detected multiple zero-day vulnerabilities in a large open source project. Our evaluations also suggest that false positives may be limited to a very small class of use cases.
Full Text Available Many security incidents are caused by software developers’ failure to adhere to secure programming practices. Static analysis tools have been used to detect software vulnerabilities. However, their wide usage by developers is limited by the special training required to write rules customized to application-specific logic. Our approach is interactive static analysis, to integrate static analysis into Integrated Development Environment (IDE and provide in-situ secure programming support to help developers prevent vulnerabilities during code construction. No additional training is required nor are there any assumptions on ways programs are built. Our work is motivated in part by the observation that many vulnerabilities are introduced due to failure to practice secure programming by knowledgeable developers. We implemented a prototype interactive static analysis tool as a plug-in for Java in Eclipse. Our technical evaluation of our prototype detected multiple zero-day vulnerabilities in a large open source project. Our evaluations also suggest that false positives may be limited to a very small class of use cases.
Full Text Available To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer's disease (AD.We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients' Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers' level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors.A lower level of cognitive function in patients (r = -0.28, p<0.001 and longer hours of caregiving (r = 0.17, p = 0.019 were related to increased caregiver burden. Greater social support (r = -0.23, p<0.001, family function (r = -0.17, p = 0.015 and caregiving experience (r = -0.16, p = 0.012 were related to decreased caregiver burden. Social support (r = 0.16, p = 0.040 and family
Byatt, Nancy; Pbert, Lori; Hosein, Safiyah; Swartz, Holly A; Weinreb, Linda; Allison, Jeroan; Ziedonis, Douglas
Most women with perinatal depression do not receive depression treatment. The authors describe the development and beta testing of a new program, PRogram In Support of Moms (PRISM), to improve treatment of perinatal depression in obstetric practices. A multidisciplinary work group of seven perinatal and behavioral health professionals was convened to design, refine, and beta-test PRISM in an obstetric practice. Iterative feedback and problem solving facilitated development of PRISM components, which include provider training and a toolkit, screening procedures, implementation assistance, and access to immediate psychiatric consultation. Beta testing with 50 patients over two months demonstrated feasibility and suggested that PRISM may improve provider screening rates and self-efficacy to address depression. On the basis of lessons learned, PRISM will be enhanced to integrate proactive patient engagement and monitoring into obstetric practices. PRISM may help overcome patient-, provider-, and system-level barriers to managing perinatal depression in obstetric settings.
The Development Program to Support Industrial Coal Gasification is on schedule. The efforts have centered on collecting background information and data, planning, and getting the experimental program underway. The three principal objectives in Task I-A were accomplished. The technical literature was reviewed, the coals and binders to be employed were selected, and tests and testing equipment to be used in evaluating agglomerates were developed. The entire Erie Mining facility design was reviewed and a large portion of the fluidized-bed coal gasification plant design was completed. Much of the work in Task I will be experimental. Wafer-briquette and roll-briquette screening tests will be performed. In Task II, work on the fluidized-bed gasification plant design will be completed and work on a plant design involving entrained-flow gasifiers will be initiated.
Esmat, Ayman; Pinson, Pierre; Usaola, Julio
In the past decades, Distribution System Operators (DSOs) have been mitigating distribution networks (DNs) contingencies by opting to grid reinforcements. However, this approach is not always cost and time efficient. Demand Side Flexibility (DSF) is one of the recent alternatives used in DNs...... congestion management. Consequently, new market players such as aggregators are needed to handle DSF transaction between customers and DSOs. This paper proposes and models a decision support program (DSP) to optimize the total cost charged by the DSO for using DSF services. Moreover, the energy rebound...
Laura Guerrero Caballero
Full Text Available Objetivos: Mejorar la calidad de vida, la ansiedad y la depresión de los cuidadores de pacientes en atención domiciliaria. Métodos: Ensayo clínico aleatorizado; 79 cuidadores principales (39 grupo control y 40 grupo intervención de pacientes en atención domiciliaria de un centro de salud entre 2000 y 2001. La calidad de vida, la ansiedad y la depresión se midieron mediante los cuestionarios COOP/WONCA y la escala de Goldberg, respectivamente, al inicio y al final del estudio. Las intervenciones consistieron en 2 visitas médicas para realizar la anamnesis biopsicosocial del cuidador y una visita de enfermería sobre educación sanitaria. Se enviaron dos cartas adaptadas a cada cuidador y se realizaron dos llamadas telefónicas de apoyo. Resultados: Se observó una mejora significativa del grupo intervención respecto al grupo control en relación con WONCA-sentimientos (p = 0,03, WONCA-actividades sociales (p = 0,05 y WONCA-calidad de vida (p = 0,02. Conclusiones: Una intervención multidisciplinaria y adaptada a la consulta habitual podría reducir el deterioro de la calidad de vida de los cuidadores.Objectives: To improve quality of life, anxiety and depression in caregivers of patients in home care. Methods: We performed a randomized clinical trial in 79 main caregivers (39 control group and 40 intervention group of patients in the home care program of a primary care health center between 2000 and 2001. Quality of life, anxiety and depression were measured by the COOP/WONCA and Goldberg questionnaires, respectively, at the beginning and at the end of the study. Interventions consisted of two medical visits to take a bio-psychosocial history of the caregiver and a nurse visit for health education. Two letters, adapted to each carer's needs, were sent and two telephone calls were made. vlife (p = 0.02. Conclusions: A short multidisciplinary intervention program adapted to routine consultations could prevent deterioration in caregivers
Yang, Li; Zhao, Qiuli; Zhu, Xuemei; Shen, Xiaoying; Zhu, Yulan; Yang, Liu; Gao, Wei; Li, Minghui
Many factors influence pre-hospital delays in the event of stroke. This study aimed to develop and evaluate a comprehensive educational program for decreasing pre-hospital delays in high-risk stroke population. We enrolled 220 high-risk stroke population and caregivers from six urban communities in Harbin from May 2013 to May 2015, and randomly divided them into intervention and control groups. We implemented a comprehensive educational program (intervention group), comprising public lectures, instructional brochures, case videos, simulations, and role-playing from May 2013 to May 2015. We delivered conventional oral education in the control group. We compared stroke pre-hospital delay behavioral intention (SPDBI), pre-hospital stroke symptom coping test (PSSCT), and stroke pre-symptoms alert test (SPSAT) results between the groups before and 6, 12, and 18 months after health intervention. There were significant differences between before and after intervention (P pre-symptoms alert, and reducing the possibility of pre-hospital delays.
Full Text Available The Parent Child Psychological Support Program (PCPS was established in an area of South West Dublin in 2001. Since then until May 2008 it has offered its services to over 700 children and their parents. This preventative, parenting support service is available to all parents of children aged 3 to 18 months within its catchment area. During periodical visits, the infant’s development and growth are measured and parents receive specific information about their child’s progress. Parents are empowered in their parenting practices, thus promoting consistency and synchrony in parent-child interaction. Between 2001 and 2006, 538 parents and their infants participated in the Program. Out of these cases, 130 (24.16% were considered to require additional support and were included in the Monthly Meeting Case Review (MM based on initial concerns The aims of this study were: 1. to review the first five years of MM cases and to explore the socio-demographic profile of the MM cases in comparison to those not in need of additional support (non-MM and 2. To illustrate an approach to refining the case review process which will inform practice and provides the service providers with better understanding of the early detection of parent-child relation difficulties. In pursuing this goal the cases screened over five years of practice were analyzed to explore the structure of the different factors by using statistical techniques of data reduction, i.e. factor analysis. The results showed that the MM group differed on several socio-demographic dimensions from the non-MM group and there was a four factor structure underlying the case review decision process. Implications of this research are discussed.
PHARMAID study protocol: Randomized controlled trial to assess the impact of integrated pharmaceutical care at a psychosocial intervention on caregiver's burden in Alzheimer's disease or related diseases.
Novais, T; Moutet, C; Delphin-Combe, F; Dauphinot, V; Colin, C; Krolak-Salmon, P; Mouchoux, C
Alzheimer's Disease and Related Diseases (ADRD) are associated with a caregiver burden that increases with the progression of the disease. Psychosocial interventions reported a moderate improvement on caregivers' burden. Patients with ADRD and their older caregivers are also exposed to a higher risk of developing drug-related problems. The main objective of the PHARMAID study is to measure the impact of personalized pharmaceutical collaborative care integrated to a multidisciplinary psychosocial program on the burden of caregivers. The PHARMAID study is a 18-month randomized controlled trial that started in September 2016. This paper describes the study protocol. PHARMAID plans to enroll 240 dyads, i.e. ADRD patients and caregivers, whose inclusion criteria are: outpatient with mild or major neurocognitive disorders due to ADRD, living at home, receiving support from a family caregiver. Three parallel groups will compare a control group with two experimental groups: psychosocial intervention and integrated pharmaceutical care at a psychosocial intervention. The main outcome is the caregiver's burden assessed by the Zarit Burden Index at 6, 12 and 18months. This is the first trial designed to assess the specific impact of the integration of pharmaceutical care in a multidisciplinary psychosocial program on the caregiver's burden. The results will inform policymakers on strategies to implement in the near future. [ClinicalTrials.gov: NCT02802371] Registered in June 2016. Copyright © 2016 Elsevier Inc. All rights reserved.
... chosen to help where the caregiver needs it. Education and Information Coping Skills Counseling Family Meetings Home Care Help Hospice Care for the Cancer Patient Caregivers have a very hard job and it's ...
Alexandra J. Werntz
Full Text Available Informal caregiving for dementia is common and often affects caregiver mental health. In addition to typical stressors faced by caregivers of persons with dementia (PWDs, rural caregivers often face additional stressors associated with living in more remote locations; unfortunately, this group is largely understudied. Ninety-three caregiver–PWD dyads completed measures of social support, perceived control, self-efficacy, burden, and cognitive functioning. Measures of PWD activities of daily living and mental functioning were also collected. These variables were hypothesized to predict caregiver self-reported symptoms of depression, anxiety, and stress. Contrary to predictions, only caregiving-related self-efficacy and caregiver burden predicted the caregiver’s mental health. Future interventions for improving rural caregiver self-reported mental health should target cognitions associated with caregiving self-efficacy and caregiver burden. Health care providers for rural families should focus on ways to reduce feelings of caregiver burden and provide caregivers with useful skills and tools for caregiving.
Jaracz, Krystyna; Grabowska-Fudala, Barbara; Kozubski, Wojciech
Stroke may impose a severe burden on both the patients and their caregivers. Although there is substantial literature relating to the adverse impact of stroke on patients, considerably less is known about its impact on their caregivers. The aim of this study was to analyse predictive factors of the overall burden in caregivers of stroke victims and to verify the structural model of burden, built on the basis of theoretical and empirical assumptions. One hundred and fifty pairs of patients and their caregivers were evaluated. The Caregiver Burden Scale (CB), Hospital Anxiety and Depression Scale (HADS), Sense of Coherence Scale (SOC), Social Support Scale, Geriatric Depression Scale, Barthel Index and Scandinavian Stroke Scale were all used to evaluate caregiver burden and the characteristics of patients and caregivers. The caregivers experienced a moderate burden (mean CB = 2.08) and emotional distress (mean total HADS = 14.1). Path analysis showed that higher burden was associated with a lower SOC score, higher emotional distress, and lower patient's functional status. Higher emotional distress, in turn, was associated with lower SOC and lower patient's functional status. These results show that the burden and the degree of emotional disturbance are two distinct negative consequences of caregiving. The negative consequences of caregiving depend mainly on the caregiver's intra-psychic factors and the patient's disability. Professional interventions should be targeted at enhancing caregivers' ability to cope with stress, improving their